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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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    • Scott Adams
      Great question! Even if some individuals with celiac disease don’t experience immediate villi damage from occasional cross-contamination, it’s still strongly recommended to maintain strict avoidance of gluten. The immune response triggered by gluten can vary between individuals, and even small amounts may cause systemic inflammation or other symptoms, even if intestinal damage isn’t immediately detectable. Additionally, repeated exposure—even at low levels—could lead to cumulative harm over time. Strict avoidance of cross-contamination remains the safest approach to prevent long-term complications and ensure overall health. Everyone’s sensitivity differs, so working with a healthcare provider to tailor precautions is ideal.
    • Zuma888
    • knitty kitty
      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
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