• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
threedee

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

Rate this topic

Recommended Posts

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 :D

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,955
    • Total Posts
      943,655
  • Member Statistics

    • Total Members
      67,258
    • Most Online
      3,093

    Newest Member
    CharleneM
    Joined
  • Popular Now

  • Topics

  • Posts

    • Gemma......if you are ever in London, please check out this place.  It is a 100% gluten free bakery and the food is out of this world!  I can't get bread like this in the States and it certainly is worth a road trip for anyone living in the Uk, within reasonable distance from London.  It will easily satisfy all of your bakery cravings and I bet the bread freezes well. http://www.beyondbread.co.uk/
    • Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

        If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
  • Upcoming Events