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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
      @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. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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