Crohns vs celiac

[Tummyache]

I have not had a definitive diagnosis yet, but know I have some kind of recurrent inflammatory intestinal problem which appears to be influenced by diet. Up to a recent negative celiac gene test for both DQ2 + DQ8 we thought it was probably Celiac Disease. I have neither DQ2 nor DQ8 alpha or beta genes associated with celiac according to Prometheus labs, so they say the possibility of celiac disease is “extremely low.” In any event, I most definitely have gluten intolerance, along with dairy intolerance and sugar problems. We haven't wanted to do a gluten challenge for the blood antibody test or endoscopy, because when I eat gluten my intestines swell, frequently with severe diarrhea and vomiting. And, I have ended up in the ER with my small intestines almost swollen shut...of course, they have threaten to remove part of the intestine; but, fortunately it has never come to that. They did a barium swallow and CT scan on the last ER visit, which verified it was small bowel inflammation…..but no endoscopy with biopsies. Generally, I seem to be able to control my problems through a gluten + dairy free and low sugar diet. But, it would be nice to know for sure what is really wrong.
I have had digestion problems since I was a baby…am now in my 60’s. I was skinny my whole life until going gluten free about 6 yrs ago, am now normal weight. I have a history of vitamin deficiencies, macrocytic anemia, mouth ulcers, skin rashes, peripheral neurologic problems with surgery on both hands/fingers, osteoporosis, migraine deviate with visual auras every 3 to 9 months apart, Hasimoto’s hypothyroid, and sjorgren’s and 3 glucose tolerance tests done with “flat curve” results. All doctors and GI specialists that I have seen over the years seem to be clueless when it comes to anything that’s diet related. I have had a sigmoidoscopy and a colonoscopy, both normal; plus, allergy testing which was only positive for pollen and molds. So, at this point, I am thinking that if it is most likely not celiac, could it possibly be Crohns with food triggers like celiac, dairy and sugars? First, is it possible to have diet controlled Crohns? Would I have to be having an “episode” to be tested? [that would be easy to time as all I have to do is ingest dairy or gluten].

 

[xJillx]

Hi and welcome! I am sorry you are unwell and don't have any answers. I know just how that is. To answer your question, for those with Crohn's diet alone can rarely keep the disease in check. Most need medication. However, the wrong foods can certainly make symptoms worse.

Correct me if I am wrong, but as far as I know, Celiac does not cause inflammation. It damages the villi in the small intestine. I don't think any food allergies cause inflammation. Therefore, if your small intestine is inflammed, something more serious is going on. Have you had an endoscopy with biopsies? I think that could be most telling.

 

[Grumbletum]

Hi there and welcome to the fold. Refined sugars, sweeteners and gluten, along with caffeine, are my biggest symptom triggers. I went on the SCD diet because if this. It certainly helped with my symptoms, but recent tests show I still have chronic inflammation which is why the have me on Infiximab.

 

[Tummyache]

Actually, Celiac Disease is an autoimmune, inflammatory disease that causes villi blunting in the intestines. Researchers recently begun talking about Non-Celiac Gluten Intolerance as a separate condition. [Celiac meaning intestinal blunting] Also, anyone with other bowel problems have a highter chance of also having Celiac Disease as a co-condition, or just being originally misdiagnosed as something else in the first place. This is especially true for IBS, which seems to be a catch-all label, when doctors are clueless to what's really going on.

However, I do know I am gluten intolerant because of the reaction I have to gluten exposure. For example, recently I took one quick sip of my son's beer shortly after receiving the genetic test results that gave me "extremely low" probability that it was Celiac Disease. [Stupid, I know, but after all, I'm not suppose to have it, right?] I had intestinal swelling that night and proceeded to have diarrhea and loose stools [greenish tinted] for 3-4 days following. I ate absolutely nothing else but the food I had prepared prior to that. So, I knew it was the beer, which is on the No-No list for celiacs. I became dairy intolerant shortly after birth and have had challenges at different times by different doctors who confirm that I am intolerant to all the factions of dairy, not just lactose. The sugar intolerance was always pretty obvious...but confirmed by the Clayton Foundation Biomedical Research group while I was lucky enough to be one of their patients, years ago. They said that every time they tried to grow my cells in a sugar medium, they died. And to limit my intake of sugar foods, and fruits in excess. They told me that I am most likely Hereditary Fructose Intolerant.

So, that brings me to the point of wondering if it could be IBD that I have since I have been in the ER with partial small bowel obstruction? Do I have to be flaring to be tested for it [ to have an endoscopy]?

 

[xJillx]

No. You don't need to be flaring in order to be tested. If someone does have Crohn's, inflammation can be present without a person even knowing. Also, there usually is some evidence of past inflammation. Finally, biopsies will be taken and tested for IBD.

If you do suspect IBD, don't hesitate in scheduling a endoscopy and/or colonoscopy. If all tests come back clear, it will put your mind at ease. And if some evidence of IBD is found, well, good thing you were proactive! Good luck!

 

[Tummyache]

I have been to see David's GI, Dr. Kumar, in Austin, TX. He will do an upper endoscopy + colonoscopy [both with biopsies], and follow up with possible pill-cam in October, when we are in town again. Meanwhile, I have been pretty stable on my restricted diet for the last 6 yrs --only very minor episodic symptoms, except for an inflammation marker that's been a wee bit up]. It would be nice to finally get a real diagnosis and maybe it will help my daughter, who has been dx'd with possible Crohn's too.

 

[David]

Good luck! I hope Dr. Kumar is treating you right!

 

[Tummyache]

Here is a follow up with the colonoscopy and upper endo + biopsies: It was a complete waste diagnostically speaking He said the pill cam was not necessary. He dismissed me with a dx of probable IBS.[Ha!] Since then I have had a few episodes.; one of particular note in the last month. 3 weeks ago I ate a piece of fresh coconut about the size of an Oreo cookie and 20 minutes later began having intestinal cramping which escalated into a full blown flare which has been tapering off going on 3 weeks now. [3 week is a bit much for a food allergy] I have quit going to the doctor out of frustration every time I have an episode. I just quite eating and go on a liquid diet for 2-3 days and try to get the pain and diarrhea to calm down. Fortunately, this time I didn't have any vomiting only nausea. If it doesn't work the first time and starts up or continues I go back on the liquid diet. Seems to work for me. I'm so frustrated at this point. I don't think I ever want to go to another gastroenterologist. I have seen 5 now over the years....only one did biopsies...they all gave me the run around...none of them were really very helpful.....and they were all pompous as could be! A couple of them even had the gaul to tell me they didn't treat "digestive disease disorders" --- what in the ^&%$$#@!! are gastroenterologist for if not THAT? They sure do know the words "lactose intolerance" though, but seem clueless about other carbohydrates problems. In recent years, "Celiac disease" finally hit their level of recognition --before that they were clueless to it's existence. I know they study digestion diseases in medical school, but I think most of them sleep through the lectures. They are harder to diagnose and evidently not as much fun to treat.

As of 2015 we do know a couple of things for sure now: I am 100% intolerable to cows milk...all it's factions, lactose as well as some of the proteins; most likely am Hereditary Fructose Intolerant; also wheat sensitive, although I do not test positive for Celiac disease on any DNA or other test. My ferritin remains high between 360-500 which continues to be thought a marker for inflammation.[Intestinal problems remain my big issue - so that's got to be where it's at] In the mean time, I continue to self-treat:
[1] Diet: 100% dairy free; Gluten Free; Very Low Sugar [especially no fructose + no artificial sweeteners]; Mostly chicken + fish; Preservative free; Natural, unprocessed, and organic if possible, no alcoholic beverages
[2] Supplements: Therapeutic vitamin + mineral formula, Super B's Complex, Vit C, Vit D3, Calcium, Fish Oil, Flax Oil, Garlic Oil, Probiotics 2 x day
[3] Exercise: Lap swimming 6 days a week
[4] A loving husband, family, grand-kiddies, lots of traveling, sunshine, and smiles

 

[buttER]

Dear Tummyache
What a never-ending story. You are being very sensible and looking after yourself in such difficult circumstances. I love your self treatment [4]. I wish I could get all of that too!

 

[sidney75]

Hi Tummy,
I have somewhat similar circumstances. Have a tentative Crohn's diagnosis after a series of obstructions. Somewhat confirmed with biopsies; GI said it's not definitive my PCP said definitely with all of the chronic inflammation. Started out on meds, but ended back up in the hospital;I had extreme bloating, distention, and pain although the CT at that time showed no inflammation (previous CT scans had). It made no sense to me. What I know for sure is I've developed extreme intolerance to sugar and flour, along with some other food products. My blood test for celiac was negative. Within fifteen minutes of eating/drinking sugar or flour containing products I blow up like a balloon and my abdomen is hard as a rock. It's very painful. I found some information on SIBO which makes sense with these symptoms. I was not sensitive to flour and sugar prior to my obstructions which makes me think there are some lingering bacteria in my small intestine that do not belong there and thrive on certain foods. I've been following a very strict diet along with probiotics and overall have felt great for about a month now. I did get a little careless last week and had wheat toast and a snack cake and now I am running a fever, in pain and bloated all over again with painful bm's. I'm not sure if you've read at all about small intestinal bacterial overgrowth (SIBO); I have not been tested because similar to you I'm exhausted with tests, but so far as long as I stick with the program things seem to stay calm.

 

[Catherine]

Hi Tummy,

Have you all removed sucrose from your diet?

If you have HFI your daughter has a 25% chance of all have this. The HFI diet must be hard.

 

[Tummyache]

Good to hear back from you King of Orange, Sidney 75, and Catherine. Yes, I have been tested for HFI and believed to have it. So I cannot eat sucrose, fructose or sorbitol. [There are also some other minor sugars that are prohibited too.] In actuality, this disease can be milder or life threatening -- I am fortunate in that I can eat a wee bit of a few fruits in if not often, like lemons, tangerines, and a few berries, and most vegetables. But, basically, no deserts, sweets, sodas, and most fruits and some even no to some vegetables. Too much wheat gives me asthma and diarrhea.

What I am associating as possible Crohn's are the repeating episodes of non-infectious gastroenteritis which for me last 5-15 days, which have included historically at various times: mouth + throat ulcers, nausea and vomiting, bloating + gas, diarrhea, intestinal cramping + pain, low grade fever during worst of the symptoms, and one emergency room visit with mid-small bowel obstruction. Dramatically changing my diet and cleaning it up with no sugar, dairy, processed foods, and limited preservatives has made a HUGE difference along with the vitamins + minerals and especially the Probiotics. I think if I were ever really diagnosed Crohn's, it certainly would be considered "mild" and pretty much "stable". Although there have been times in my life when episodes have occurred more or less frequently and with more or less intensity. But, as I said, the changes I made really made a big, big difference. As I have grown older...72 yrs young now...I am having more sensitivity to foods again as I did in my youth; and my intestines seem more "hyper sensitive" all the time now. I guess that's to be expected as all of the body ages inside and out.