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Couple Of Things


charlotte-hall

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charlotte-hall Apprentice

I was diagnosed in December 2011, with a 98% positive blood test. I got no better, so 2 weeks ago, I went for a biopsy. The results show, that I a, obviously very very sensitive to gluten. The consultant said I am the most sensitive he's ever seen. Apparently I had a score of 284 on the blood test, and normal is under 10. I'm not sure what that score is about? But surely thats not good! I am very disheartened as I have been on a gluten free diet for 4 months. But I suppose I need to concentrate more on cross contamination. I live in a house where there is still gluten.

I was just wondering on some tips that could help me get better? Including how to prevent cross contamination, and also what does that score signify on the blood test? And what does super sensitive mean, is it possible that a crumb could make me ill? And also what do I do if i do intake some gluten and how long will it take for me to recover? Although I feel ill constantly!

Many thanks! Hoping for some answers and to recover soon :(


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JustNana Apprentice

Charlotte

I am sorry you are getting no improvement in 4 months. I am not one of the experts here. What are your worst symptoms? Do you have the Dermatitis Herpetiformis or Hashimoto's thyroid too? How did your vitamin panel come out? Were you gluten-free when the biopsy was done? These are all things to know. To my knowledge the biopsied samples are looked at under a microscope to see how badly damaged the villi of the small intestine are. I am not aware of a test that can tell how badly you may react to a minute amount of gluten, but after being gluten-free you become MORE sensitive.

Are you having flareups or just no change going gluten-free?

Hang in there. People who know far more than I will respond no doubt.

WElLCOME :-)

Lisa Mentor

Hey Babe! I really isn't the end of the world, but it might seem like it right now. B)

Being diagnosed with Celiac means that you have to be very careful about what you eat, at home and at school. And being 14, that's pretty hard to do.

Do your mom and dad have a good idea about what you can eat and what you can't? Can they help you make choices.

The key is to be totally gluten free, yet being able to hang with your friends and feel "normal".

You really should eat nothing with gluten. I can suggest some teen age food that you can enjoy with your friends, if you would like.

Takala Enthusiast

"Super sensitive" means that you are one of the people who react to smaller amounts of gluten. There is a wide variation in how sensitive people are who are gluten intolerant or celiac. I have read here that some researchers claim that a typical celiac can handle "x" very small amount of gluten per day, my reaction has always been, :ph34r::blink: is that a typo or did he really say that ?

Also, the longer one is off of gluten, if one is celiac/gluten intolerant, the more sensitive one becomes if one accidentally ingests a small amount of it. They don't know why this happens (yet) but it is a real phenomena.

To prevent cross contamination, you have to be almost neurotic in a mixed household. This is where, if you have any sort of over - meticulous tendencies, go ahead and use them. For example, I have lived gluten free with my spouse for going on nine years now, he is the only person who I would trust to cook for me, outside of certain restaurants or maybe a few people here, and even HE has gotten me. Our house is gluten free (he did this voluntarily after about 2 years in ) but sometimes an "iffy" item makes it way in, which we give to him to eat. Example: this weekend I laid a cutting knife down on a paper towel on the counter, after I had cut off a piece of cheese to eat. He comes along, opens up a bag of dried fruit I had not checked the status of, takes several pieces of it out to snack on, and absentmindedly lays them right down on the blade of the knife. I am looking at this, thinking, oh, how cute. :huh: He has the entire kitchen and he has managed to zero in on the cutting tool I was using, before he gets a paper napkin, and I just managed to see this. So I took the knife and quickly cleaned it and he saw me and said, "oh...." :o They don't mean to do this, but they (gluten eaters) DO THIS ALL THE TIME.

This means that it is best, if you are in a kitchen with mixed items, to be there if and when somebody else is preparing something you might eat at the same time they're messing around with something they might eat.

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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