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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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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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