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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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      Seeking advice on potential gluten challenge

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      Thanks so much! 
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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

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      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
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