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Weak Positive Diagnosis For Celiac


janu

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janu Rookie

I am a retired schoolteacher, age 57. I've had 28 years of symptoms with various diagnosis, IBS, Ulcerative colitis, arthritis, trigeminal neuralgia, anemia, depression, high blood pressure, diahrea, etc. I have always been slightly overweight but have suffered many of the other symptoms associated with Celiac. My doctors always treated individual symptoms, usually with some form of medication to mask the symptom. After doing a medical d-tox through my chiropractor I felt hugely better! Then my daughter was diagnosed with Celiac. I traveled to see her doctor and had the antibody tests done. The results showed a "weak positive" probably because I had been gluten free for 2 months because it made me feel better. My dilema - should I go back on a regular diet for a period of time and have the tests redone or does it matter? I also have two other children that are having unexplained health problems. Would it help them if I had the confirmed biopsy or is that insignificant? :unsure::unsure: : :unsure:


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MySuicidalTurtle Enthusiast

I was diagnosed with Celiacs and then my brother was but my Mom who had the same and even worse symptoms couldn't get a positive blood test. She didn't want a biopsy so wenton the diet and has benifited greatly from it. You don't NEED an official diagnosis unless for some insurance or something but other than that if you want to stick with the diet because you feel better then do it!

Your other children shuld get tested. Even if you aren't official their sister is.

KaitiUSA Enthusiast

You do not need an official diagnosis unless there is a reason you think you need one. I would personally just listen to your body...you know it runs in the family and you had a weak positive when trying to be gluten free for 2 months then that should also speak for something.

As Kristina said the rest of your children should be checked....other blood relatives should probably get checked as well considering it is genetic.

Rikki Tikki Explorer

I agree Janu, I don't think you need to go back on gluten to get a positive result. If you feel better, I would just stay away from gluten. If you already have a weak positive that should be good enough. I think the other kids should be tested. With me, the doctor didn't even tell me he suspected it, he received the blood tests did the endscopy and then told me. Of course, that was years after a doctor had told me my blood showed a disease, but he didn't think I had it because it was so rare! Guess what that was, celiac. Who knew....... ;)

ianm Apprentice

I don't have a formal diagnosis but I feel so much better since going gluten-free that I really don't need one. Try not eating gluten for a while and if you feel better then that is all you really need to know. The only "cure" for this disease is to stop eating gluten so it won't hurt to try.

Guest chickadee

:rolleyes: ( Open Original Shared Link ) If you cut and paste this link it will take you to the Mayo Clinic web site page that deals with diagnosis of Celiac disease.

For anyone who thinks they may have Celiac, going gluten free can alter your results.

Not everyone will have positive results no matter what they do.

I never had a positive result because my gluten intake had been limited by the time I went to see the specialist. I was told by the specialist to go gluten free if it made the symptoms go away. Part of the diagnosis involves symptoms.

When we took our son to the sick childrens hospital they told us that it was possiblel for our son to have the blood test and biopsy done, and still be negative.The recomondation when this happens is to listen to your body. If you eat something that makes you sick then dont eat it.

Take Care, Brenda

Lesliean Apprentice

Being weakly positive is like being somewhat pregnant. You either are or aren't. And the antibodies start dropping immediately on a GFD.

The next step would be the "gold standard" biopsy and I believe it is starting to be questioned as a neccesary test for diagnosis. It is sometimes like looking for a needle in a haystack and those who are positive on the blood work are often already gluten-free and reluctant to eat gluten again for any reason. After 2 months your intestines might have healed enough to biopsy negative. My doctor said that in order for me to have the biopsy I would need to go back to eating gluten for 2-3 months. No way for me!

I am so glad you are getting good results from a GFD and that family members are pursuing this too. I hope the other kids will get tested as your serology was positive. Also, if your family has intestinal damage they might have temporary trouble digesting dairy too as it is broken down by the tips of the villi in the small intestines.

Leslie


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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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