It's Not celiac disease, So What Could It Be?

[threedee]

What could be the root cause of my misery?

All the blood tests for celiac disease are negative, biopsy was also negative. All other blood tests are in normal range. Hypothyroidism is ruled out. I have been having depression, anxiety, poor memory and motivation problems for at least 12 years. I am sure some of the symptoms are not related to the original problem, but are likely caused by stress that was caused by the original problems (depression, lack of motivation, lack of energy).

After the biopsy I started gluten-free diet. This have resulted in following changes during about 1 month period:

- before I had bowel movements every 3-4 days, now mostly every day and sometimes I skip one day

- I am feeling hungry very often, which is a new feeling for me (I eat a lot of fruits and veggies to fill my stomach)

- I can now exercise without getting anxiety attacks (before 45min run/jog at 70-80% HRmax could cause problems)

- my max HR has increased from 195 (measured 1-2 years ago) to at least 200 (could be even higher) [i just had to test because I was enjoying running so much!]

- I started to get a lot of ideas and I felt like my brain had been unleashed

All of the above could be exlained by more healthy diet and more exercise, but I don't know:

- My diet already contained enough vitamins and nutrients

- I did low intensity exercise like walking regularly

- I ate usually full grain rye bread that has high fiber content (and 30-40% wheat), so I wasn't expecting that much faster bowel movements

- I have experimented with various vitamins and nutrients before, but I have never managed to get this strong reaction (Earlier I took C, most B, D, Mg, Zn and fish oil. I have also tested E, but it made me feel sick)

I don't want to be on gluten-free diet needlessly, but for now it seems to be working better than anything I have tried so far

Thanks,

threedee

P.S. In another thread I was asking about double blind gluten testing I could do home. That is still a plan, but not just yet.

[Ursa Major]

I say that it would be an awfully big coincidence if all of those positive changes were for any other reason than taking gluten out of your diet.

It is very likely that you have non-celiac gluten intolerance. Also, there are so many false negatives with celiac disease testing, that celiac disease isn't really ruled out despite those negative tests.

And I agree, if you have doubts about needing to be on the gluten-free diet, go ahead and eat gluten for a few days and see how it makes you feel. If you start feeling crappy again you'll have your answer! I think that for you to stop doubting, that is what you need to do.

[tarnalberry]

The dietary challenge *IS* a valid diagnostic test as well, and you seem to have a big-ol' POSITIVE on that one.

[loco-ladi]

I agree, if YOU need to assure yourself that the gluten-free diet is what is causing the more positive changes in your life even with the negative medical test, go ahead eat gluten see how you feel, if you have no changes then great for you, if however you again start to expirience the setback and other issues you had before then you have to decide if you have proven to yourselfwhats going on rather than prove it to the medical community.... its not their body and not their life and personally I dont believe they have one iota of actual compassion about what people go thru.

[hathor]

I agree with what has been said. There are false negatives with traditional celiac testing. Gluten can be damaging your body for some time before the antibodies show up in your blood and the damage is observable in your villi. I've certainly read a number of people here who had negative tests, continued to eat gluten (and feel crappy), then were tested again and were positive. Why go through that?

You can challenge with gluten and see how you feel. I won't get into how one could doubleblind this. It seems like it would be difficult. The food would have to taste the same either way. To be doubleblind, the person giving you the food would have to not know if it had gluten in it or not either. Theoretically, you would have to have no contact with anyone that would know whether your food had gluten in it or not. Sounds complicated.

If you think your mind might be seeing an impact from the elimination of gluten that isn't there, you can always be tested with Enterolab. Their testing is more sensitive. I thought I felt better off gluten, but I wasn't completely better and I had a skeptical husband who wasn't really onboard with the program. Positive test results from Enterolab convinced us both. It also helped me to confirm that, yes, I do have a problem with dairy and egg (I had been largely avoiding it, but I wasn't obsessing about bits that made their way into restaurant meals) and discovered I had a problem with soy that I didn't even suspect.

[Nancym]

Vit. E gives me gluten symptoms something fierce from some sources. I suspect it has wheat germ oil in it.

[Ursa Major]

Vit. E gives me gluten symptoms something fierce from some sources. I suspect it has wheat germ oil in it.

Actually, you are right. A lot of vitamin E is derived from wheat germ oil. And often they use soy as well. If you suspect your vitamin E is a problem, you need to check with the manufacturer to find out what it is derived from.

[threedee]

Thanks for replies! I am definitely continuing gluten-free diet for a while. If I don't get any setbacks that way I'll then do some gluten exposure testing. First I'll try double blind with gluten/wheat filled and "placebo" capsules. There's a limit how many capsules I can eat, so final option is to test with real food if I don't get any reaction from capsule test.

I still think the problem could be unrelated to wheat/gluten: Maybe I didn't get enough nutrients from food after all and leaving out grains made more room for the "good stuff", like fruits. Another option is low bile output. Bowel movements may get more frequent with less fiber in diet if bile output is too low.

Well, we will see :-)

threedee

[loraleena]

You can be gluten intolerant even if you don't have celiac. This can cause just as bad health problems. Get a stool test from enterolabs. You can be gluten free for this test.

[threedee]

My colleague offered her gluten-free sandwich to me a week ago: It seems I might be having issues with grain also

I have been doing some hard running exercises now that I can run, but either I overdid those or the gluten-free sandwich had some negative effects on me: First my bowel movements skipped two days, then one. Now back on once a day. Resting HR was also higher, now back to "normal" (5 bpm lower than never in 12 years...). For all that I know about training physiology, it didn't look like effects of too hard training.

Still one month to go before I see a doctor... She is a functional medicine doctor and knows about IgG allergies, stool tests, etc. so I am hoping she is good.

BTW: I have now started my own web site where I will try to help others with undiagnosed ("subclinical" aka "there is nothing wrong with you", as doctors like to call them) health problems. Se my signature.