2 Years Later - Still Hurting

[Woodrow]

I have officially been gluten-free for two years. When diagnosed, doctor said my numbers were off the charts and were the highest he's seen.

I have never cheated once (with gluten) and am beyond careful (cross-contamination, etc.).

But two years later, I still feel horrible. Stomach almost always hurts; pretty much every meal goes right through me. Not fun.

Has anybody else experienced the same thing where you just don't feel any better? If so, have you had further tests done that have showed anything?

Thanks.

[ang1e0251]

Sounds like you probably have other intolerances. You can go to an allergist for testing if you wish. Others who have had this testing can speak up and say which type of tests is best. Or you can go through an elimination diet and keep a food journal to identify problem foods.

I'm at the two year mark and this year I've learned to cut out nearly all grains, cut way back on sugar and complex carbs. They just don't digest easily for me and I'm feeling better than ever!

To go on the elimination diet, cut back to natural whole foods seasoned with one ingredient spices. That's meat, beans, vegetables, eggs and fruits. Dairy if you tolerate it. If that is still making you feel unwell, cut out dairy. Keep your journal and note your symptoms too. If dairy doesn't do it, then cut out eggs. When you get to where you feel well, for a few weeks, then start adding in new foods, but only one food at a time, every few days. You should be able to pinpoint the problem foods. If you post what your normal diet is like, some here can try to help you find the problem foods.

Some folks who continue to have problems, have turned to the Specific Carbohydrate Diet. There is a long thread about it in the forum. It could help you also. Please keep us informed how you are doing. When you post a question, others benefit from reading it.

[Woodrow]

Sounds like you probably have other intolerances. You can go to an allergist for testing if you wish. Others who have had this testing can speak up and say which type of tests is best.

I should have mentioned that I have been to an allergist who tested for a large number of items, and nothing showed up.

[happygirl]

Have you had follow up bloodwork or repeat biopsy?

[Matt007b]

I should have mentioned that I have been to an allergist who tested for a large number of items, and nothing showed up.

still doesn't mean much, I've been to an allergist too - had the skin test and the allergist said basically the blood test (RAST) are worthless and only good for spotting true food allergies (the kind that can kill you). Iwent 4 years with severe nausea and living off anti-nausea pills trying to survive until I finally gave in. Now i'm 1 week into my food elimination diet (and hating it) but I know it's food related.

Basically a food intolerance is mission impossible to show up reliably on a test. The only true test is through trial and error and what your body tells you. I was just like you, I did the same thing "i'm not allergic to anything, i've been to an allergist so i'm not gluten intolerant but I feel sick!" wasn't until I took soy out is when my nausea left. Now I suspect gluten is an issue..

Based on your symptoms I would think about maybe getting a fructose breath test or go to wikipedia and read about it because that has basically the same symptoms you're talking about but it could be anything (dairy/casein/lactose/fructose/sorbitol/sugar ...you can be intolerant to anything..)

Take fructose out for a good week or 2 (it's not easy..) and then after that eat a bunch of pears..apples..honey..high fructose corn syrup and see what happens. If that fails then go super bezerk on the elimination diet or do the elimination diet first. Hope we both feel better

[Ahorsesoul]

Keep a food log. You maybe able to see some pattern. You could also post everything you've eaten for a day here to see if someone here can see something. Include the food, how it was prepared and the brand name. Brand name is important.

You said you've been gluten free two years. How long did you go dairy and soy free? These items sometimes need to be off your diet for your intestines to heal.

[dilettantesteph]

You might want to try an even more careful diet for awhile. No processed foods, grains, beans mushrooms, citrus, nightshades, nuts that you don't shell yourself, anything that has any hint of being suspect, for awhile and see if that makes a difference. Then, if it does, add foods back one at a time so that you can find out what is bothering you.

[Lombardi25]

It could be something unrelated to your diet as well, I went 20 plus years sick and got diagnosed last April (2008) with Celiacs. After a year and a half gluten-free, and all my blood tests and a repeat endoscopy showing that I was definitely eating gluten-free and all that (no cc or anything showing, villi grown back) I was still sick, even getting worse to an extent. My doctor just kept sending me back for the same blood tests over and over each time I visited, and I was having to work from home alot, waking up every morning sick for hours and hours on end.

I finally went to a specialist in Boston last month and he repeated the colonoscopy a few weeks ago, saw signs of Crohn's (lab could not confirm diagnosis, but doctor does believe it's early signs of Crohn's or some variation) so he put me on the steroid Endocort. For the first time that I can remember, dating back to late elementary/early high school, I have been free of being sick for almost a month now. I've had one "sort of" bad day in that time span, when before hand I was getting sick every day before going on the meds. I have been to work for a month straight now besides that one bad day, and it feels great to get up every morning and not worry about how sick I will be. The doctor started me on antibiotics now too so that as I get weened off the steroids going into the new year those will be the replacement (hopefully), so I mean not that my case is the same as yours, just saying it could be something not related to what you are eating etc. I have never "changed" doctors or gone out and found a second opinion before, I've always listened to my doctors and let them do their thing, but I finally had enough and I am so glad I found this specialist and am feeling healthy now.

Also, I too got all the allergy tests a few months ago before going to the specialist and had gotten tested for lactose prior to my Celiac diagnosis last year, so I had tried everything.

Good luck to you!!

[mrsscary]

I have officially been gluten-free for two years. When diagnosed, doctor said my numbers were off the charts and were the highest he's seen.

I have never cheated once (with gluten) and am beyond careful (cross-contamination, etc.).

But two years later, I still feel horrible. Stomach almost always hurts; pretty much every meal goes right through me. Not fun.

Has anybody else experienced the same thing where you just don't feel any better? If so, have you had further tests done that have showed anything?

Thanks.

I'm always in pain too. i have been gluten-free/WF since I was dianoses in JUne 2003. I also found out at the same time that I had almost no villi in my stomach and that I had Ulcerative colitis. So I have been gluten-free for almost 6 years. I still have flare ups, I still get glutened. I have yet to find a solution.