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Getting tested and healing?


PumpkinChic

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PumpkinChic Newbie

I figured out I have serious problems with gluten earlier this year and I believe it's celiac based on symptoms and family history but decided not to go get tested because of the pandemic. But recently my mom has figured out she has her own allergies and we, along with my sister, have all been talking about seeing an allergist. I've already been gluten free for 4 almost 5 months now. Is it too late to get tested? Would I have to reiintroduce it to get a proper diagnosis? 

I've also realized I've been dealing with this for 10 years now. I'm in my 20s so I still have youth on my side, but because it's been there for so long, do you think it'll take a long time for everything to heal?

 


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cyclinglady Grand Master

All celiac disease testing requires you to be on a full gluten diet.  To do a gluten challenge would require 6 to 8 weeks of gluten (1 to 2 slices of bread daily or equivalent) or 2 weeks if going directly to endoscopy.  The gut literally can heal in as little as a few weeks.  Most people do not heal that fast, but some can.  Also it takes time to build up the antibodies that leave the gut and circulate in the blood stream.  Best to follow what all the celiac research centers  say.  

Scott Adams Grand Master

Given that the gluten-free diet is perfectly safe, provided you're getting enough fiber an nutrition, it's your call if you need to go through the gluten challenge and be formally diagnosed. Here are some questions to ask yourself:

  • How important is it to you to have a piece of paper from your doctor telling you that you have this? 
  • Would having a diagnosis help you stay on the gluten-free diet for life?
  • Would you cheat on the diet otherwise?
  • Are you ok with paying higher life insurance premiums, and if the ADA (Obamacare) is overturned, having a pre-existing condition and possibly paying higher insurance rates?

The official recommendations by doctors would be to do the gluten challenge and get a formal diagnosis, however, that path does not work for everyone. Many people on this forum are self diagnosed.

trents Grand Master

Since Celiac Disease is not an allergy, I would not go to an allergist for testing but to a GP or a GI doc. It is possible you are allergic to gluten but that doesn't account for most problems with gluten. What are your symptoms, anyway?

Scott Adams Grand Master

I agree, if you are going to get tested for celiac disease it is best to do it right via your doctor and if they recommend it, a GI.

Wheatwacked Veteran
On 10/18/2020 at 2:17 PM, PumpkinChic said:

recently my mom has figured out she has her own allergies

I was a mouth breather my entire life, doctors said it was something I just had to live with. At 63, I awoke every two hours to either breath, pee, or from back pain. Since starting gluten-free, my prostate has shrunk, back pain is gone and I am now a nose breather, among other improvements in my life.

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    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • 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.
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