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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
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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