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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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    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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