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Is A Celiac Dx Necessary?

FruitEnthusiast

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FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

I already know I'm gluten intolerant. I'm wondering how important it is to have an official Celiac DX, and I could use some opinions.

 

I just went to see a new GI at UCLA who specializes in Celiac/Gluten Intolerance to address my ongoing chronic C that is closely related to the multiple food sensitivities that started after I went gluten-free 2 1/2 years ago. I'm still sick and figuring out what I can and can't eat.

 

Of course this new Dr. thinks it's important to know if I have Celiac or not. I asked him how Celiac treatment would differ from NCGI treatment. He said Celiac is an autoimmune disorder with inflammation which makes it more serious, and it would be more important to monitor my vitamin/mineral levels to guard against bone loss, Vit D deficiency, Thyroid problems, etc.

 

I knew all of that already from what I've learned on this site and my other readings. So far he's given me a Celiac Genetic blood test, but I don't have the results yet. Will that test tell me anything?

 

I've always said I won't do the "Gluten Challenge", and he hasn't asked me to - yet. Honestly I don't think I'm well enough to do it. I have enough trouble getting what I can eat in my body… and out again (sorry if that's TMI)

 

Does anyone think doing the "Gluten Challenge" and getting a small intestine biopsy is worth it for a certain DX. Or can I continue to monitor myself and get tested for deficiencies/imbalances as if I had Celiac to be on the safe side?

 

Is it necessary to know for sure if I have Celiac? I'm going to continue being gluten-free regardless, and continue taking extra good care of myself.

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SMRI Collaborator
SMRI
Posted

The only issue I could see is your insurance company not covering the tests without a diagnosis that supports needed those tests annually or however often.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

Yes, I was wondering about that too, something to consider. Thanks.

WinterSong Community Regular
WinterSong
Posted

Besides the insurance issue.....

 

I'm fortunate enough to have a solid diagnosis. I've heard a lot of gluten sensitive people on this board say that they would get too sick doing the gluten challenge and for them it wasn't worth it. They just treat it as seriously as a Celiac would. My mom is also one of those people. 

 

Some people feel like they can cheat if they don't have a Celiac diagnosis. My sister is most likely gluten intolerant or Celiac, but she won't do a thing without positive blood work. 

1desperateladysaved Proficient
1desperateladysaved
Posted

Is there some reason to believe you would ever have serious doubts?  Would someone very near (in the house) have serious doubts which could cause you trouble for you or them?  Would you qualify for tax advantages or other advantages if you had a celiac diagnosis?  Personally I thought for me the gluten challenge would be unethical, because I perceived my reaction could be extreme or dangerous.  I did a genetic test and think it was useful.  I found that incredibly I did have 2 copies each of DQ2 and DQ8.  From that I could somewhat guess at my children's having at least one of the genes and both of my parents had to have it.  Now, they can all watch for symptoms and hopefully won't have to suffer for 30 years before making a discovery of celiac.

 

  I do like to keep track of my nutrient levels and I think it could be much cheaper to check some of those than to do the challenge and associated testing.  Have you ever had anemia or other known deficiencies?  I also think it could be good to do an endoscopy (I finally did) to ) see if the damage is healed,( if there was any), and to look for other possible causes for the symptoms.  The celiac damage should be healed up after 2 years.  If you feel your symptoms changing when you went gluten free will keep you consistent with the diet, all you must do is get better!  Keep your diet as varied as possible.  I had to go for some new foods and a few old ones.

 

Best wishes for healing.

 

Dee

 

We have both been at this a couple of years.  I am sorry to hear that you are still having some really tough times. 

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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