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Billygean

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Billygean Apprentice
Billygean
Posted

Well you can probably see from my other posts that I had mono followed by chronic fatigue and a lot of digestive issues. My coeliac test was negative but I went gluten free on the advice of a coeliac relative and got almost better. Since I still had a while before returning to college I decided to try a gluten challenge. I had four slices of bread in four days and was in bed for the best part of a month. I'm still pretty confused because I also had a cold at the time which can cause issues for people with chronic fatigue. I went off the gluten though and I am no longer ravenous and light headed, and the chronic fatigue's almost gone again.

Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

BG

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nikki-uk Enthusiast
nikki-uk
Posted
Saw a doctor and my relative with coeliacs said he might diagnose me on dietary evidence. He's sent me for a blood test and says it'll be positive if I have it. I know this is rubbish so I saw another dr. He was great and said to keep an open mind and do the blood test as if it's positive he can diagnose me but I've been glutenf ree for another 6 weeks now (6 months before the gluten challenge) so we think it won't be. He's referred me - but I'm not going to eat wheat - so I don't really know what to do next?!?

You are right in thinking your blood test will more than likely come back neg after 6 weeks gluten-free - a small bowel biopsy would also most likely be negative as well I'm afraid :(

So, see the doc anyway (possible diagnosis on dietary evidence?)

OR do the gluten challenge (at least 6 weeks ON gluten)....only you know if you are up to that

OR take a gene test (might give you a better idea if you KNOW you carry the 'known' genes for celiac disease)

OR you could just carry on as you are :)

There are many people on this site without a 'formal' diagnosis, but KNOW gluten is no good for them.

Good Luck :)

ang1e0251 Contributor
ang1e0251
Posted

I'm one of those with no official dx. I don't feel the need and will not go back on Gluten , uh-uh. My children are grown and don't need my test results if they choose to be tested. Also I'm a little concerned how my insurance carriers will treat me with a dx. I've heard rumores. You know how you feel gluten-free, if you choose not to do a challenge, it's a personal choice of your own.

zero Newbie
zero
Posted

The gene test sounds like a good suggestion. Have you been tested for a wheat allergy (are there skin tests for that)? It is nice having a label of celiac to justify the dietary restriction but your reaction is so severe that you might just be going through a lot of pain, hassle and expense to finally be told to avoid gluten which you already know.

I'll also suggest that if your feeling adventurous (and because I am an engineer and think of such weird things), you could do another experiment. You have a reaction after eating bread but you introduce a bias because you know you are eating gluten. With the help of a conspirator, you could set up a series of meals which usually don't but occasionally do contain hidden gluten. Perhaps a little flour mixed into spaghetti sauce or something and record what your reactions are. At the end of the experiment you can compare how your reactions correlate to the gluten. I suggest this because one of the most satisfying experiences I had after diagnosis and being gluten free was having an unexpected reaction which I tracked down to some soy milk containing wheat. Even with the celiac diagnosis, it confirmed to me that gluten really was the problem which was not apparent prior to the diagnosis. Good luck.

rob

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

There is a skin test for wheat allergy. I had it done last summer. My allergist diagnosed me with gluten intolerance based on positive resposne to diet (among other factors) so maybe visiting an allergist would be helpful. She seemed to know much more about Celiac and gluten intolerance then my primary doctor.

buffettbride Enthusiast
buffettbride
Posted

My husband is one of those in the "no diagnosis" category as well. We discovered his gluten intolerance after our daughter was diagnosed with Celiac and we decided to keep our house gluten free. Suddenly his tummy "wrongness" went away and so did that peculiar rash on his fingers. ;) He decided that pursuing a diagnosis wasn't as important since he knew gluten (and sometimes dairy) made him feel awful, even when his blood screen came back negative.

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      By cristiana · Posted

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    • knitty kitty
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      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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