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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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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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