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Gluten Challenged And Puzzled!


Gwen B

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Gwen B Rookie

Can anyone relate?

Am I gluten intolerant or not. I am so puzzled.

Here's my story. It's a bit long but if you want the short version, scroll down to the bottom

I'm not sure when it all started. A couple of years ago I decided to eat healthier. I was doing more exercise and eating better but I seemed to be putting on weight and instead of feeling better after all the excercise I seemed to be tired all the time and sometimes faint and dizzy. I decided to follow the South Beach diet, at least the last stage of it, so, light on bread and carbs generally. I lost ten pounds and felt more energetic but the occasional dizziness still plagued me. Also the occasional stomache aches and loose stools/D became went from being intermittant rare events to more regular occurances - say two or three times one month and then nothing for a couple of months.

I slacked off the exercise the following year as I seemed to be tired so often. Then in the fall I increased my excercise (bikram yoga) to see if getting really fit again would make me feel better again. I got fitter but was often exausted, so I checked in with my doctor and had bloodwork done which revealed that I was low but not deficient on B12. I also had the tissue transglutaminase test and checked for thyroid problem proved negative. I had asked for this since I knew that my mother had chosed to go gluten-free after years of digestive issues and anemia and responded positively. My grandmother has DH and has been gluten-free for 35 years. They both also have low thyroid.

The B12 did give me a huge boost in energy but gradually over the past year the stomache aches and loose bowels became more frequent and in September/October I realised that I had as many bad days as good days per week and was feeling tired all the time again. Sometimes it is as if my arms and legs are heavy and I just can't seem to find the energy to move. I also felt dizzy and faint often and even a little depressed but I thought that was because of the tiredness.

Anyway, after another bad night I decided to try going gluten-free to see if things improved. I had several social comittments coming up and didn't want to be sick over the holiday season. The stomache aches stopped for the first couple of weeks and I felt better, with more energy. Perhaps psychsymatic effect of feeling 'in control'. :D

Then back came the gas and nausea and stomache ache. So through mum's advice and looking up on this forum I went lactose free. This made me better except for a weird gut feeling. I finally tracked that down to cassein in soy cheese/rice cheese. The only times I had a relapse of the stomache ache was when I'd eaten out, once when I did I also had a very bad hive attack and so after a little reluctance (more gas!!) I gave up soy too,and eggs, just to be safe.

I had just two inexplicable episodes of the Return of the Dreaded SA. Must be CC. I thought. I'm still tired a lot of the time. My bloodwork from November saw all normal results although I think my Hb (is that iron levels) was quite low 12.4 when 12 is deemed anemic and 16 high. I take multivits, B12, Thyroid Support med (that was normal too 2.57) enzymes, probioitic tabs and still feel low on energy and but not as down as I was before going gluten-free.

All through this my family have gone along with this amiably enough. They think I'm a bit crazy, so do my friends. 'Surely I can't be that sensitive' and 'shouldn't you see a dr?'. My Dr says my blood is all normal therfore I'm OK and there are no more tests to do. My Hubby doesn't want me to do Enterolab because of the cost.

It was driving me insane, so yesterday I decided to do the gluten challenge. I ate two slices of hot bread and felt sure I would be in agony again last night.

I wasn't. Some hours after I had eaten the bread. My stomach felt gassy and I burped a lot and still am this morning but nothing else! :huh:

Now I don't know what to do. Help please! <_<:blink:

Sorry this is such a saga.

Short Version.

gluten-free since Nov 1st 2007 also CF, Soy and Egg free. Gluten Challenged yesterday (2slices bread) and now just a little gas, bloating and burping! :huh: Any experience?


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    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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