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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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    • catnapt
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    • knitty kitty
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    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
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