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Calprotectin - what are normal levels?

I have been suffering with Crohn's for several years now but my IBD is in control using Azathioprine. However in the last month or so I have been suffering quite badly, particularly with bloating and what I can only describe as feeling sore inside particularly in the central right abdominal area. After a couple of weeks of this and it not subsiding, I saw my GP and a blood and fecal calprotectin test was ordered. I was also prescribed an antacid (Lansoprazole) which did help a bit.

I have had both of these tests in the past and they have usually come up normal, however this time I got a phone call asking me to come in the same day. It turns out that the calprotectin test came up abnormal with a count of 1800. Having Googled I found on Wikipedia that a normal count for my age is somewhere between 51 and rising to 112 at 60, although I'm not quite there yet, so my result seems very high indeed! Since the number is also indicative of severity, it would seem that the inflamation must be rather severe and hence why i am feeling lousy! I was wondering however, whether the average result for a person with Crohns might be higher than normal anyway as even with it being under control, the count is bound to be somewhat elevated? Also, can Crohns cause a result that high?

Anyway, I have been put on to a course of Prednisolone for a week to be tapering off at the rate of one tab a week. I have also been given vit D with calcium to offset any bone depletion.

An ultrasound of the small intestinal area has also been requested along with an appointment to my gastroenterology consultant, although what concerns me is by the time this has taken place (one usually has to wait several weeks for this via the NHS), the prednisolone might have taken effect and the test might be nugatory!
 
From my lab:

Fecal Calprotectin is an indicator of the presence of neutrophils
in stool and is not specific for IBD. Other intestinal ailments
including GI infections and colorectal cancer can result in
elevated concentrations of calprotectin. The diagnosis of IBD
cannot be established solely on the basis of a positive
calprotectin result. Patients with IBD fluctuate between active
and inactive stages of disease. Calprotectin results may also
fluctuate. GI bleeding of as much as 100 mL per day will increase
the fecal calprotectin concentration by only 15 ug/g.
INTERPRETIVE INFORMATION: Calprotectin, Fecal
50 ug/g or less: Normal

51-120 ug/g: Borderline elevated, test should be
re-evaluated in 4-6 weeks.
121 ug/g or greater: Abnormal
 
Location
San Diego
Yes, Crohn's can drive calprotectin as high as 1800 or even higher. That elevated number means there were a lot of neutrophil white blood cells in your gut. (fecal calprotectin is derived from these cells), which in turn indicates that there is likely a lot of inflammation. Whether the inflammation is due to Crohn's cannot be determined for certain from the test number alone, but it is a significant piece of evidence pointing in that direction.
 
Ok, so from the your lab aypues I know its not related to any minor traces of bleeding that I might have had recently but must be related to some significant inflamation. I am aware that it can be indicative of other inflamatory conditions such as bacterial infection.

Scipio, I am guessing that I am being treated on the basis that since I do have Crohn's then this would be the most likely cause although I do wonder why bacterial infection hasn't been ruled out before starting me on Prednisolone?

My blood test was normal so would bacterial infection have provided other indications in the blood test, e.g high CRP count? Wouldn't inflamation in the small intestine interfere with absorbtion of nutrients and vitamins and hence also show up as deficiency of something (depending on which part of the small intestine) in the blood test?

It certainly feels like there is a 'lot of inflamation'!
 
In case of bacterial infection you would have diarrhea or fever probably. They'll retest you after the prednisone course and discuss a change in therapy i guess.
That's good they are very reactive and call you straight away, you are lucky. I had very high calprotectin level even with humira and doctors didnt change my therapy nor were worry about it.. result is that I ended some months later at the ER with important bleeding in my small bowel so they finally react...
Good luck and dont worry too much, high level of calprotectin are classic in crohn's, you just need to find the best treatment for you
 
Thanks for your kind comment Guerrero. I am indeed grateful that I got a fairly swift reaction and will try not to worry too much and just see how the new treatment works out.

It shouldn't take a trip to ER to get things moving but I had something similar happen with my Sarcoidosis when the GP dismissed the purple granulomas that had formed on my legs as insect bites. This despite my insistence that I am not prone to them and very rarely if ever get them and never that many or that big, and no bite point. Also despite the fact that I was already being investigated by the Rheumatologist who by then suspected Sarcoid - so it was in my notes. He should have been immediately informed and would no doubt have arranged a follow up appointment when quite likely in light of the evident manifestation treatment would have been started. Instead, I was told that my wife should change the bedsheet more often! After a few weeks I developped hypercalcaemia and I ended up in A&E (ER) and was off work for a couple of months and then had to have a gradual return to work. Fortunately my boss at the time was very understanding.
 
I have been on prednisolone now for 4-5 days but am not feeling any better so I'm getting a bit concerned. Prednisolone has previously worked for flare-ups and I have usually felt better after 2 or 3 days. Yet, this time I am feeling no better. In fact, it does not seem to be having any effect at all and I am possibly feeling a little worse. Had a rather bad night last night and got very de-hydrated. I am due to see my GP in another week and a half but am wondering whether to try and get an appointment sooner - but I don't want to seem impatient. How long should I give the pred to work?
 
Maybe you can call him or email him and see if he tell you to be patient or he want to give you an higher dose.
How many mg/day are you on?
 
I'm on 40mg (or 8 x 5mg), which, in my experience is the highest they are usually prepared to prescribe. I have then been instructed to taper it off after a week at the rate of 1 tab per week. Last time, which is now maybe a couple of years ago or more, I only had them and needed them for one week and I started feeling better after a couple of days, although it did take a week or two for things to settle down completely. This time I seem to be feeling no benfits at all yet. Since my Lansoprazole has been reduced from 30mg to 15mg, I am beginning to wonder whether this might be some other form of ulcer or something else. On the other hand I guess I could just be a particularly bad inflammation and may need time to subside. Unfortunately I have not been eating properly for maybe 3 weeks now so that isn't going to help either, but I have been trying to stick a as normal a diet routine as I can manage.
 
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After my last flare they gave me 50mg/day to taper down every 5 days... not sure if 10 mg should change much...

What are your symptomes? If you think it comes from your stomach try to go back to 30mg of lansoprazole or try another ppi (like 40mg of omeprazole) it has been effective in my case.

I still think 4-5 days is maybe not enough to kick down a flare, but if you feel worst then dont hesitate to tell your doctors
 
My symptoms are pain and discomfort in the mid-right abdominal area. GP thinks the inflamation is in the small intestine. I have had problems in the terminal ileum before leading to low B12, but that is not a problem at the moment. I think I will give it a couple more days until I have finished on the full 40mg dose and see what happens. If I still see no improvement then I will ring the GP and ask if I should go back to 30mg of Lansoprazole. maybe I was lucky it kicked down so quickly last time.
 
Well more than another week has passed an I am feeling no better. It seems that I can eat only light foods such as toast, rice pudding and breakfast cereals. Tonight after a couple of days of this I had a proper evening meal and I am seriously suffering again and still up at 03:46am as a result!

The GP is still trying to get me an appointment at the clinic. In the meantime the pred is still making no difference. Over the last few days I have been trying to identify whether there is anything specifically in the diet. Its still too early to tell, but I am beginning to suspect that it may be related to my fat intake. I mentioned this to my GP who simply suggested keeping to a low fat diet for now. In the meantime, its back to the toast and rice pudding I think. I am truly baffled though as this does not seem to be quite in keeping with my usual Crohn's symptom pattern.

My main problem does seem to be constipation and slow bowel movement which is usually quite the opposite to what I might expect with a Crohn's flareup. For example I had my meal at around 5.30pm, I was feeling OK until around 8.00pm. Its now 4.00am in the morning an I am seriously suffering. There is a LOT of gas with this. I have never suffered quite in this way before and am definitely wondering whether there is something else going on.
 

cmack

Moderator
Staff member
I hope in time it will pass and you will reach some form of remission. I never got any answers either and I live in Canada. 14 surgeries resulted in remission and now I eat healthier than ever before for fear of another 14. Best wishes. You can talk to me any time you like.
 
Just checking in to see if you are finally feeling better ornif the dr was able to see you and figure out what was happening.

I hope things have gotten better and that's why you hadn't posted an update recently.

Well more than another week has passed an I am feeling no better. It seems that I can eat only light foods such as toast, rice pudding and breakfast cereals. Tonight after a couple of days of this I had a proper evening meal and I am seriously suffering again and still up at 03:46am as a result!

The GP is still trying to get me an appointment at the clinic. In the meantime the pred is still making no difference. Over the last few days I have been trying to identify whether there is anything specifically in the diet. Its still too early to tell, but I am beginning to suspect that it may be related to my fat intake. I mentioned this to my GP who simply suggested keeping to a low fat diet for now. In the meantime, its back to the toast and rice pudding I think. I am truly baffled though as this does not seem to be quite in keeping with my usual Crohn's symptom pattern.

My main problem does seem to be constipation and slow bowel movement which is usually quite the opposite to what I might expect with a Crohn's flareup. For example I had my meal at around 5.30pm, I was feeling OK until around 8.00pm. Its now 4.00am in the morning an I am seriously suffering. There is a LOT of gas with this. I have never suffered quite in this way before and am definitely wondering whether there is something else going on.
 
Thanks for asking. Unfortunately things are still no better. After the last 2 days on toasted bread, rice pudding, noodles etc I tried some potato and veg (sweetcorn, peas and broccoli) yesterday and am still paying the price several hours later. There was no fat in this (other than the small quantity that may have been contained in the bit of gravy I had - 16g per 100g - a tablespoonful is about 10g, so 1.6g total) so that would seem to blow my fat theory out of the window. Rather, it is looking like my gut is just being sensitive to anything more difficult to process than bread, rice pudding and noodles. I seem to be able to tolerate potato and tuna OK as well but my options otherwise seem pretty limited at the moment.

I have finally received an appointment to see my gastroenterology consultant, but it is two weeks away! Still that is pretty quick for them. A gastoenterology nurse called and suggested I double up on the Azathioprine. I'm not too keen on that since I was advised when I started on Aza that there is an elevated risk of developping cancer when taking this drug. Since other mesalazine didn't work and I reacted to them badly, my options were pretty limited so I accepted it initially and have been on 50mg a day for several years now and things have been under control - until now. However I don't want to increase that risk unless there really is no other option. As it is, I am still on both Aza and pred at the moment and from past experience, that should have been sufficient to bring this under control. Still, it is something that I will discuss with the consultant when I seem him and take it from there.
 
Well we are nearly two months on and things have not changed much! However, at least I have now seen the consultant and had an endoscopy. The consultant thinks from my description of my symptoms that this might be a stricture. He advised my to avoid anything fibrous, including vegetables with skin such as sweetcorn and peas. He has also increased my Azathiorprine dose and aksed me to continue reducing the prednisolone. Although the biopsy results are still to come in, the endoscopy up to the TI was completely clear, so it seems the problem may be further up in the small intestinal area. In the meantime, the procedure has significantly upset my GI system and although a week has now passed, things have yet to settle down to their previous level. It did take a few days last time so this does not entirely surprise me although I am now getting rather fed up with feeling sick to the stomach and generally unwell. I am hoping that the MRI scan next week (I'm still waiting for a written confirmation and the prep details) will be a bit more informative.
 
Had my MRI scan today. Had a bit of a scare as I suffered an allergic reaction to something they gave me. :eek2: Fortunately, it was not too serious and I did not suffer an anaphylactic shock or breathing difficulties, but my face went very hot, then numb with pins and needles. This was about 15-20mins into to the scan procedure so they had already done quite a few scans by then. It happened at the point where they took me out of the tunnel and set me up for the last bit that requires the injection of Buscapan. When I went back in, it was during the second scan of a series of three that the adverse reaction occurred. I was able to hang on to complete the third but when it was clear that this was more then the usual 'hot flush' and was not subsiding that I had to inform the radiologist that there was a problem. I was removed from the tunnel immediately whereupon it became instantly evident that my face, chest and back were covered in hives! I then checked over by a doctor and given an anti-histamine tablet. It was an anxious few minutes - for both myself an my wife - until the anti-histamine kicked in and the reaction started to calm down. They monitored me for a while then let me go home.

I did have to drink a litre of 'dye' containing fluid before going in, but I think that the ProHance may have been injected with or just after the Buscopan. I guess if both are given at the same time, this would make sense of the comment made by the nurse when she said that the never know for sure which of the two or whether the combination of both causes the reaction. After a bit of Googling I have learned that ProHance and Gadolinium-based contrast agents can produce hypersensitivity, but a similar warning is given with Buscopan.

The radiologist immediately noted the allergic reaction on my medical record. I mentioned to him that I have had MRI scans before without any such adverse effects. He said that there are at least 3 different dyes that are used and that maybe I am sensitive to this particular one. He then checked my record and confirmed that I had not been given this particular one before.

I would certainly not like to repeat the experience and am grateful that it was not more serious than that!
 
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Its now 5 months later and I am due to see the gastroenterology consultant next week and I have just today received a copy letter from him to the GP stating that the capsule endoscopy showed no ulceration or lesions, but did show "very mild vilious blunting which can occasionally be seen in Coeliac disease". In fact, "no ulceration or lesions" was also observed in the colonoscopy. So what explains my high calprotectin level?

Over the past few months I have managed my condition by reducing my intake of fibrous vegetables with skins as instructed. This had had variable success and it has been a struggle sometimes. I also think I have lost a bit of weight, but overall it does seem to have helped.

I have always had some problems with some types of bread (particularly Hovis! and granary) and occasionally with breakfast cereals, although such problems have seemed inconsistent and sporadic. I have sometimes had unexplained acute sharp abdominal pains after breakfast which double me up for a couple of minutes after which they calm down and dissipate and I continue my day as normal. This happened more often when I was still a child, and was dismissed when I complained about it, but still happens occasionally even now.

I have never been on a gluten free diet, nor was it ever recommended, but I did request a blood test for Coeliac a few years back which came back negative so I thought no more of it. I did also find out a while back that a couple of my cousins have been diagnosed with Coeliac which I duly noted for reference but naturally now I have some questions.

From what I have read, Coelliac is an autoimmune disorder, but so is Crohns, except that Crohns can affect any part of the GI tract, including the mouth (which might explain my phantom "toothaches"), while Coeliac specifically affects the small intestine and villiae. My "gut feeling" (pun intended) has always been that my problems are predominantly in the small intestine, and some of my secondary problems (e.g. unexplained anaemia and chronic fatigue) are down to malabsorption, however my laymans observations have mostly been dismissed. Until recently, other than an ultrasound, I have never had any definitive tests to establish that whether my small intestine is diseased. This piece of information does at least seem to provide some evidence that the small intestine is affected in some way.

So what is the significance of "very mild" - does this indicate Coeliac or is it being caused by Crohns, or something else? Are there any other causes of mild vilious blunting? I will be seeing the consultant next week so will hopefully know more about what his opinion and recommendations are, but I would appreciate any advice on what other questions I perhaps ought to be asking him?

BTW. my concern is not to be labeled on way or another, but to get a better understanding of what is going on so that I might be able to deal with it better.
 
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Location
San Diego
There are blood tests for the presence of certain antibodies that can rule in or rule out celiac disease. If your GI doesn't order them you may wish to suggest them to him/her as a way of getting a better sense of what those findings from the capsule camera endoscopy mean.

Calprotectin can be elevated due to just about any form of intestinal inflammation including celiac disease. But from what I've seen yours is higher than what would be usually expected from celiac disease especially a mild case. So even if present celiac may not be the whole answer.
 

Lynda Lynda

Senior Member
Location
N/A
I am really confused. Gradually over the past 2 months my colon has been getting sicker and sicker. So I had to stop eating solid food that was from restaurants. Then I had to stop eating solid food that was prepared at home. Then I started eating only soft foods and my smoothie. Now I have been on a liquid diet for almost 2 weeks. I have watery diarrhea 4 to 6 times a day and I am basically staying home. I will see my Gastroenterologists Family Nurse Practitioner this Monday. I had a stool test recently and it came back negative for c-diff but my calprotectin level was almost 700. My current medications are only my Cholestyramine Powder. My last colonoscopy was in 2014. Should I go to my appointment and demand a colonoscopy and MRI ? I'm worried about this high calprotectin level because I am afraid it is damaging my colon. I am also nervous because I have never seen this Family Nurse Practitioner before and I have always seen my Gastroenterologist himself. I went online to research Nurse Practitioners and it seems like they will be used more and more in the medical field. I currently have UC. Thanks for listening.
 
I think you should have a stronger treatment. I doubt Cholestyramine powder can help much with inflammation on going with your UC. I think you should see a doctor yes.
Hope you'll feel better soon.
 

Lynda Lynda

Senior Member
Location
N/A
Is Lialda an anti-inflammatory drug ? Is it taken every day or just for flare-ups ? I took it every day for several years until I got this new Gastroenterologist in 2015. But my previous Gastroenterologist DID write me a one year script in 2015 ! So, I have not taken taken the Lialda for 2 years. There is probably a thread about Lialda, I will look for it later. My phone battery is low so I must go.
 
There are blood tests for the presence of certain antibodies that can rule in or rule out celiac disease. If your GI doesn't order them you may wish to suggest them to him/her as a way of getting a better sense of what those findings from the capsule camera endoscopy mean.

Calprotectin can be elevated due to just about any form of intestinal inflammation including celiac disease. But from what I've seen yours is higher than what would be usually expected from celiac disease especially a mild case. So even if present celiac may not be the whole answer.
Scipio, thanks for your observations. It will be interesting to see what my consultant says tomorrow. You used the plural which suggests that there is more than one blood test that might be helpful so I will ask about this. He may want to repeat the Celiac blood test again anway or he may agree with what you are saying, i.e. that the "very mild vilious blunting" is just one part of the picture and may relate to something else. Perhaps the Calprotectin test should also be repeated.

Either way, I am puzzled by the abscence of inflammation in both the capsule endoscopy and colonoscopy tests so from where does the the high calprotectin level come? Curious.
 
Its been a while again and I have now been tested for Celiac via serology and endoscopy/biopsy and this has been ruled out, which I guess is a good thing. Meanwhile all of the camera tests (endoscopy, capsule endoscopy and colonoscopy) have shown no sign of inflammation, so I have been told its not a Crohns flareup. I was referred to a dietitian for advice but since the Celiac has been ruled out, I have been referred back to the consultant for further diagnosis. My symptoms of bloating, abdominal discomfort/cramps and some nausea persist so I am rather puzzled and am not due to see the consultant again until October. The saga continues...
 
Things have been dragging on for quite a while and it has been some time since I updated this thread. I saw the consultant in October 2018 and since things had calmed down a little and the Crohn's tests were negative, despite my stating that I still felt very rough he said "see you in a year"... Mid 2019 things got significantly worse again and my GP did another cal-protectin test. The result was again very elevated with a count of 1200. After some difficulty and several weeks delay getting in touch with the clinic (during which time I was feeling very rough indeed), I was put on Prednisone. To my horror, this made things much worse but I was encouraged to stay the course. This seemed very strange since in the past Prednisone had been very effective in bringing a flare-up under control and taking it had never caused me any trouble. By the time I saw the consultant again in October 2019, I was in acute distress, although I had discovered through missing a dose that the absence of Prednisone actually reduced symptoms which I mentioned to him. The steroid was then switched to Budesonide which I tolerated much better, but it didn't seem to help. Tye consultant commented that the symptoms I was reporting coupled with the negative results from previous Crohn's tests, didn't fit the pattern of a Chrohns flare-up and seemed to point to another cause, so he referred me for additional tests including a SeHCAT and two hydrogen breath tests, testing for lactose and glucose intolerance.

I had the SeHCAT in December, the results of which I don't yet know, but here we are now a year and a half later and finally today I had the first of the two hydrogen breath tests. Well, I tested positive for Lactose intolerance! This was confirmed to me immediately after the test (the test incidentally made me feel very nauseous and ill which I mentioned to the nurse) and I was given some information to take home regarding the condition and what foods to avoid. While it beggars belief that I had to wait so long for this and I am not exactly overjoyed with having to deal with another health condition, there is a certain measure of relief that this has now been identified and I can therefore start to deal with it. I am due to take the Glucose intolerance test in two weeks time and to see the consultant in April, at which time I should have a fuller picture.
 
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my little penguin

Moderator
Staff member
Glad your getting some answers
Lactose can make you very miserable (my non ibd kiddo has this ) but once you learn what to avoid things really get better
Good luck with your tests
 
Thank you for the kind comment. I have been very miserable indeed for at least the past six months due to this problem so I really do hope things will now improve as I change my diet to avoid foods containing Lactose. We will have to see how that goes. Sorry about your kid as well. Not nice for someone young.
 
Just re. lactose intolerance, items like hard cheese and butter are low lactose foods, so depending on tolerance, you may find these ok in smaller quantities. You can 'make your own' lactose free milk by adding a liquid lactase enzyme - this can save you money, and allow you to enjoy better quality milk.
 
Thanks for those tips. Have been reading up and discovered the same regarding butter and hard cheese. That perhaps explains why I didn't react to cheese the day before the test and perhaps why butter and cheese are allowed on the day just prior to the fast before the test. For the last week I have now woken up for 3 days in the middle of the night in agony with cramps. Does going lactose free cause withdrawal of some kind? I have found that taking plenty of water seems to help.
 
Well, my glucose tolerance test was positive so looks like this might be SIBO and probably explains why the lactose free diet, although somewhat helpful has so far reduced symptoms only slightly. Will be a while yet before I see the consultant to find out what the next step is.
 

crohnsinct

Well-known member
Ahhhh, well if it is SIBO, that might explain why when you removed some foods that were feeding the bad bacteria you had an increase in symptoms. They refer to this a die off. As the bacteria die off they kick it up a notch. SIBO is a bear to get rid of. Best to use the antibiotics combined with diet. My daughter is using SCD for her Crohn's but it also treats SIBO and her doctor feels she has that as well. She experienced the die off effect about a week to two weeks after starting the diet BUT it could have also been her Crohn's flaring a bit also. Same symptoms for both issues really clouds things.

Good luck at the appointment.
 
That is interesting. I hadn't heard of the "die-off" effect and wasn't informed off the possibility by the diabetic clinic that carried out the Hydrogen breath tests. Thanks for pointing it out. I have just being doing a bit of reading. It is difficult to express just how bad I felt after the test, but the day of both tests I was in agony for the rest of the day and on both occasions it took at least a couple of days afterwards to recover. Not surprising since the bacteria had just been given a feast! After the first test (Lactose) I immediately went on a Lactose free diet as instructed which would have removed some of the foods that were feeding the bacteria as you point out. FoIlowing the second test (Glucose), I have not been asked to reduce other sugars, however the gastro clinic has now been in touch and it looks like I will be prescribed antibiotics pending review of the SeHCAT results.

When there is more than one thing going on, it is understandably difficult to determine what is causing symptoms. The assumption in my case (not unreasonable given my Crohn's history) was that this was a Crohn's flareup and so I was treated accordingly with Prednisone. It drove me to distress! It turns out that Prednison tablets contain a considerable amount of Lactose which exacerbated my symptoms and why stopping them actually improved things.... It seems that Lactose is often used as an additive although it beggars belief that medications might contain known allergens!

You touch on another point - namely that it can be "a bear" to get rid off. The message I am currently getting is that after a course of antibiotics I will be OK. Of course, I hope that it will turn out to be as simple as that, but given my medical history, I have good reason to consider that the reality might be a little different. Naturally my thoughts turn to prevention of re-occurrence. Is SIBO the cause or the effect? (i.e. did SIBO give rise to Lactose intolerance, or did the severe effects of the Lactose intolerance give rise to the SIBO?) Or, was there another cause? How do I prevent it from happening again? Will I be able to re-introduce Lactose after the treatment or should I stay off it? Would a FODMAP diet be beneficial to help determine if there are any foods I should avoid? Is there anything else I need to do to prevent a re-occurrence? These are just some of the questions I have at present and will be asking my consultant along with a possible request to be referred to a dietitian.
 
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crohnsinct

Well-known member
Where do I start?.......

Antibiotics are very helpful in fighting SIBO but quite a few people require more than one round.

Antibiotics with diet are the fastest way to get control over SIBO and continued diet is the best way to keep it away.

You are absolutely right in that identifying the cause is very important. For most IBDers it is the IBD that caused the overgrowth to begin with so controlling IBD well will go a long way to prevent a reoccurrence.

As far a diet, FODMAP diet is not meant to be a permanent diet. It is a diet meant to identify problem foods for IBS. It could help SIBO in that you might take away some of the foods that cause problems (lactose and carbohydrates). The other diets used are GAPS and SCD and a few others. Unfortunately, if it was SIBO and Lactose that caused all of your problems, you will likely stay on the restricted diet for a year or two. I have heard of a few people who have been able to transition back to a regular diet but no one we have met.

Dr. Siebecker has a great informational site. Take a poke around and that might help you with questions for you physician. https://www.siboinfo.com/diet.html
 
Thanks for the link. I take your point regarding FODMAP, and my reason for considering it was exactly what you describe - using it as a way to identify whether there are specific foods that cause a problem. I am aware that one should not stay on it for more than 8 weeks and follow it preferably with the oversight of a dietitian. It just does not seem logical to me that one would kill the bacteria with antibiotics and then just resume eating as previously. I'm not sure that my IBD (i.e Chrohn's) was responsible as it had been in remission although its not impossible. I had been suffering badly for the last 6 months and had many occasions of severe bloating and undoubtedly distension which may have led to the back-flow of bacteria into the small intestine, but that had to be caused by something.

For a number of years I have been maintaining a list of food items that have caused me especially severe trouble with the object of looking for a pattern. Currently it contains around a dozen items. The majority of them contain foods which are related to the current investigation, namely Lactose, whey, milk milk powder, cream powder, glucose syrup. Some just say "sugar" but do not state which form. Could it be that malabsorption of these sugars have been my problem for some time? I am not diabetic as my blood-sugar levels stayed at a normal 4.3 during both tests so, could it be that malabsorption of these sugars has led to the excessive gas/bloating which then led to the SIBO? If so, then it would seem to make sense to reduce or eliminate them from my diet, but I would need to prove they are responsible first. Does that make sense?

Anyway, I will have a read of that information you have linked.
 

crohnsinct

Well-known member
Sugar feeds that bad bacteria. The only "sugar" we are allowed on SCD is honey. There is a long explanation of why but I won't bore you right now.

I gave up trying to really figure out what caused my daughter's SIBO or even if she really has it. SCD diet has made her sooooo much better and it is a fine diet and relatively easy for us to follow so we are just going with it.

Good for you for getting a registered dietician on board. That is really important. Unfortunately, we are having trouble finding a well trained dietician for GI disorders but we are still trying.

Good luck and keep us posted.
 

crohnsinct

Well-known member
SCD also does away with high lactose products so lactose could have also been my daughter's issues.

"powders" may contain anti caking agents and those are also not allowed on SCD.
It seems like you have broken the code all on your own and just needed a little more confirmation.
 
Finally got the prescription of antibiotics (rifaximin) today. Will be starting them tomorrow morning for two weeks. At least by the time I see the consultant early April I will be in a position to discuss any progress.

Interesting note about anti-caking agents. Its one of those things you note in passing but not pay much attention to. Whether I have "broken the code" or not I am not sure, just drawing inferences based on what I have read so far. I guess they will be either confirmed or be shown to be incorrect in due course.

I am relieved that finally after all these months something has been identified and treatment can finally proceed. The whole episode has been debilitating, very much limiting my activity, and I have lost weight and weakened. It has also been demoralizing to the point of feeling worthless and worse. Now with commencement of treatment I will be able to get on the road to recovery and will be able to regain some strength. I am very much hoping for better things to come!
 

crohnsinct

Well-known member
Glad to hear such a positive outlook! Fwiw we were told you should see an improvement in symptoms within days of starting the drugs. Good luck! Keep us posted!
 
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