Unresponsive To The Gf Diet

[mroper]

I have been gluten-free for 6 months now. I am still having severe diareah and gut pain, I also have been very tired and sore for the last 6 months. I turned my home into a gluten-free home back when I was first diagnosed. I have an appt. with my GI and primary Dr's next week. Does anyone know what the next step is?

[KaitiUSA]

Have you been completely gluten-free? Shampoos, cosmetics, lotions, soaps, etc? This was causing me a reaction until I found out what it was and found all gluten-free products. For some people it takes longer for the intestine to heal and longer for symptoms to clear up. Have you noticed any difference at all since being on the gluten-free diet? In the first couple months it is hard because you tend to have more accidents with things slipping in so that could also prolong it.

I have been gluten-free for over a year now and I still have occasional bad days where I don't feel so good. But I feel over 10 times better even on a bad day then I did with gluten in my diet.

[mroper]

When I was first diagnosed I got rid of everything containing gluten, I did a clean sweep of all gluten containing products knowing that if I used them I knew I would be even worse off. I am the only cook in the house and am very careful of what I use (my daughter has celiac disease also).

I do feel somewhat better than I did before the gluten was gone, however I see myself feeling worse day after day. I feel like I am "getting sick" all over again, this is so frustrating

[KaitiUSA]

Have you considered you maybe have another food intolerance or allergy? Try keeping a food journal and see what days you feel worse.

You may want to get tested for other food intolerances or an allergy. York Labs has a lot of things they test for you may want to look into that.

Hope you get feeling better

[Canadian Karen]

Hi.

Another possibility, although it is rare, is collagenous colitis (also called microscopic colitis). I also had diarrhea for years that didn't respond to a gluten-free diet and the dr's starting talking about refractory celiac. I was referred to a professor who specializes in celiac and he did a colonoscopy and took several biopsies. He sent them away to be viewed microscopically by a pathologist and it confirmed that I had collagenous colitis. We are currently trying to find a treatment that works for me although we seem to be having some success with budesonide. The diarrhea has stopped. We have to see if it works over the long run... Maybe discuss this possibility with your dr.

[celiac3270]

Step 1: Make sure you're entirely gluten-free--make sure there's nothing that you have in the house that has not been verified as gluten-free. Check toothpaste (Crest and Colgate are fine, but Sensodyne is not), shampoo, makeup (if you're a female), etc.

Step 2: I agree--keep a journal. Keep track of when you feel really sick, stools (formed or not, how frequent), stomach pains, feeling out of the ordinary, and also everything that goes in your mouth. You may notice a correlation between when you get sick and a certain food. If so, cut it out or if it's something like rice, potato, corn, milk (or a product of one of these things) get tested for allergies.

Step 3: Look into other possibilities. Are there structural problems? See if your symptoms match up with the symptoms of other conditions that often accompany celiac. If you haven't already, get tested for allergies, problems with the liver, thyroid, etc.

Finally, don't be alarmed if you come up with nothing. Now, if your intestines are completely healed (check with follow-up bloodwork or endoscopy), then you should be feeling better. If there is still irritation, your symptoms could remain solely for that reason, in which case, there's no cause to be alarmed with persistent symptoms.

I'm approaching my one year anniversary and I'm not better either--still getting tested for other things--I hope you get better--I know how it feels--it seems like eternity when you know you're doing everything right and it doesn't work.

[Padre]

Have you though about tropical sprue? Have you traveled to SE Asia or carribean? They say it is very difficult to distinguish b/t tropical and celiac. Treatment is folic acid and antibiotics. Hope it helps...

[Guest gillian502]

Also you should be sure to have your antibodies tested to see if you are still producing them. In that case you are either still getting gluten somehow, or are just taking a long while to recover (as I did; my antibodies took a year to start dropping.) The first thing I think your dr. should do is check your Celiac antibodies, and then go from there, to other possibilties such as Colitis as Karen mentioned.

[Carriefaith]

I am in a similar situation as you but I have been gluten free for almost a year. Like the others said check everything to make sure it is gluten free.

Other suggestions to discuss with your doctors:

- Maybe get a colonoscopy to make sure nothing else is going on

- Suggest getting tested for parasites and or bacterial infections in the intestines

- Your thyroid should probably be checked to make sure it is functioning right

- maybe get allergy testing done (like a skin prick test) to make sure you don't have any allergies.

I have had all these things done and nothing else seems to be wrong with me other than celiac disease and lactose intolerance. I haven't been getting much better so I have been doing some research and found that the pancreas can cause a lot of my symtoms (diarrhea, upper midline stomach pain, nausea, bloating, gas, low energy, and fatigue) when it is not functioning proporly. Also there is evidence that the pancreatitis may be realted to celiac disease.

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Good luck with your doctors!