Advice needed about my Gluten Free diet

[Daunting]

Hi All.

I have been trying a gluten free diet since February 17 and have not really felt much of a difference, although i am still on a Prednisone taper, Finally down to 4, 5mg pills and will decrease again by 0.5 on Friday. This past week I have been feeling some increased bloating and flatulance with some pain, which have not been there before, not sure if it is the tapering or the gluten free diet. Also I have started B12 injections and had my 3 week loading dose, each time i get my shot I feel so completely tired that it wipes me out for a full day, I don't know if this is normal or not. I have my apt with my Gi on April 9 and I plan on asking him about the injections and if I can try going back on the normal Gluten diet to see if it makes a difference. The only way I think the gluten free diet is helping is that most of the foods are based on Rice flour and rice constipates, but if that is the case I can always just add more Rice to my diet.

Oh, I forgot to mention, I have gained 15 unwanted pounds since going Gluten free and have been having some pretty big headaches with muscle cramps, not sure if it is the diet or the prednisone. I guess that is one of my big questions for the doctor. ..



I've been really down this past week was hoping that the gluten free diet would help me out.

 

[Niks]

Why did you go gluten free??

The weight gain is most certainly the pred!! Also the increased symptoms are probably the tapering. Can you call GI or nurse before your appointment? They may want to stop or slow down taper.

 

[Daunting]

Thanks for the reply

I went gluten free to give it a try, as my doctor said sometimes it does help out those who are not celiac. All my celiac blood tests have always came back false negative, my biopsies have came back negative, but as he said gluten intolerance cannot be tested so it cannot hurt to try it. But to be honest I do not feel all that great on it, no big change.
My prednisone decrease is already pretty low, this week I am at 20mg and I will be on 17.5 on Friday. My next apt with him is on April 9, I did call today and they did not get any tests results back from my iron levels, I have just been tested for hemochromiosis, so if I go see this week I will need to go see him again next Tuesday so I guess I will wait till than. I remember on my last visit he was contemplating putting me on entocort as soon as I got to a certain decrease on Prednisone so wondering if I am there yet or not, as the tapppering on entocort is suppose to be so much easier.

Just getting a little depressed lately. Feel so bloated and fat lol

 

[Beach]

When I first began eating gluten free, I ate many meals with brown rice, high in fiber. I think it was the high fiber that caused me a good amount of grief, with upset stomachs and bloating.

Since already gluten free, you might try the paleo/primal diet for awhile to see if that helps. That is where you eat grain free. Many that follow the diet will eat some aged dairy.

"Paleolithic Diet"

http://www.crohnsforum.com/wiki/Paleolithic-Diet

 

[Charleigh]

I think just GF could be a benefit but not as much as a paleo diet. You should check out the book It Starts with Food and their website www.whole30.com

Basically, you avoid all grains, all dairy, all sugar, all legumes.
I think if you want real change then you should try it for 30 days. It has made a huge difference for us.

The weight gain is probably the prednisone.

 

[Daunting]

I have switched back as of Saturday. Only difference so far is a bit more energy. Will let you guys know how it pans out, been told that a gluten free diet isn't for everyone.

 

[badbelly]

I'm on a gluten free diet and I'm not sure if it's working yet since A) I'm on pred and B) AFAIK it takes several months to really see any difference and know if a diet is working. I'm planning to write a forum post in a few months about diet and nutrition if it is helping me.

 

[grandmajese]

I've been gluten free (most of the time, I regret it when I'm not) for about a year. I found that corn and soy mess me up too. the problem is that gluten, corn and soy are in almost EVERYTHING. There are so many different names! Modified food starch? why can't they just call stuff what it really is? I had to give up splenda too. I have also found that when I eat fruit and veggies if I REALLY chew, till there is nothing left to chew that it helps a lot with the gut pain. Good luck:ylol:

 

[Daunting]

Hi.

Corn is a definetely no no in its raw state since I also have diverticulosis. But soy has never been my strong part neither.
I am starting to think processed foods are my big no no, as everytime I eat processed foods I get somewhat sick.
While I was on the gluten free diet for the past 7 weeks I stayed pretty clear of processed foods except when I tried, gluten free english muffins or pizza crust which both of them really did not make me feel to well. But home cooked Bread (the gluten kind) doesnt make me feel sick.

Anyway, tonight is my dr apt.

 

[grandmajese]

processed food has a lot of chemicals! gluten free products usually have corn. It's gotten to where if I didn't make it myself I can't eat it. Have you tried an elimination diet? that's how I found out that wheat, corn, soy and splenda give me BAD gas.

 

[crohnscait]

I have found the gluten-free diet to be helpful with symptoms, but I think I would have similar results with just a low fiber diet. In terms of the weight gain, I have found that most gluten-free products have more calories than their equivalent, especially in comparison to whole grain products. They also have very little fiber, which means that they are not as filling. When you combine it with increased appetite from the prednisone, weight gain is certainly likely.

 

[If*]

Not too sure if my 2cents will matter but, gluten free for Cd seems to be more effective with sugar free (processed sugars) not honey. Have you tried almond flour? It is super good and really makes the skin and hair look/feel more radiant.
Weight gain most likely pred.
What caught my eye was you mentioned how tired you feel after the b12 ***, OMG I have been saying that for what feels like forever. So many others always talk about a burst of energy. Something I have **never** had from the b12 ***. I am wondering if you were super depleted to start?? The difference I can tell is when I am close to being due my words slur a bit and my concentration/clarity is a strain.
Sorry if I wasn't much help. Hope all gets better soon.

 

[Daunting]

Hi and thank you.

The doctor said to try the non gluten free diet for a few weeks to see if I really feel a difference or not. I do agree with crohnscait that I may see a difference even with a low fibre diet, as gluten free foods hardly have any fibre and they are not filling. The doctor feels that the weight gain is a combination of both factors and that my B12 is slowing down my metabolism. Didnt find out anything about my Iron gene testing as my results were not in yet I get to see him again at the beginning of May and If i fee bad to get in touch with him sooner. He really wants me to get off the prednisone and to try another med, he is hoping to put me on entocort for a bit. But I guess time will see.

Thank you for you replies. Gluten free wasn't all that bad, alot of reading but it indeed kept my mind off of Crohns lol. I am going to try to a low fibre diet in the next few days to see if that makes a difference or not.

As for feeling really tired after my B12 shots, he said this could be due to the fact that my B12 was incredibly low and its a shock to my system each time I get the injection, it should past he said after a few injections. Here's hoping he is right, because after my injection I feel completed drained and could sleep the entire day or longer.

 

[If*]

Thank you for posting. I had wondered for a while now about the tiredness after b12 ***. It makes perfect sense. Being very low. Only, even after years of b12 jabs I still have the tiredness, sleepy/need a nap feeling after. Always on the same day. I have found it best to do my shot in the later part of the day since I still feel wiped out after.
I hope you don't mind if I ask, did you have any implications of being low on b12 other then the test?

 

[Daunting]

@ "IF"

No I did not see have any implications, I was really surprised. This was not my first B12 test nor as he has said not my last. On the Visit prior to my blood tests he has asked me when was the last time I had blood work and I told him over a year and he said, lets send you for a bunch of them while your there, He had asked if I get tired easy and I said yes but I thought that was because of my Thyroid. Aparently it was something else. He said he will recheck everything in 6 months for my B12, or my family doctor will. He said it doesnt really who checks as long as it gets monitored every 6 months or so.
So how long have you been B12 deficient. It is making me a little nervous know ing about that, just wondering if I now have damage in my intestines preventing the absorbion or can it happen with out damage.
Sometimes I think too much.

 

[If*]

'They' use to think a resection in the ileum would cause the problem but now I am pretty sure B12 can become deficient with scar tissue since the damage is done. Sometimes the inflammation and things just passing through might do it.
I have been doing shots for well over 5 years. Since it is forever, I do my own and have since they said for life. My level is much better now. I guess it kinda keeps things from getting worse. I have lost what I feel to be a considerable amount of small bowel.

Really glad your Dr. checked! Find comfort in having one who cares. Try not to be nervous, knowledge will help when you have a good idea what you are facing with this.

I think too much too ;-)

 

[Daunting]

Thanks for the information.

I go see my family doctor for my injections as I was told sicne the Gi requests that my B12 injections be Intra-muscular instead of the other way, it has to be performed by a doctor in case of possible muscle damage if given the wrong way.

May I ask what do you mean by saying you lost a "considerable amount of small bowel"? Have you had a resection??