Surprise Allergy! Non-Celiac Gluten Intolerance

This morning I spotted a magazine that read “Surprise Allergy” on the cover.  Of course I grabbed it.  First Magazine’s May 11, 2009 issue has a story on Non-Celiac Gluten Intolerance (NCGI).  The article tells of a woman who had many Celiac symptoms – excessive fatigue, moodiness, GI problems, wheezing, acne, muscle pain and swollen joints – but tested negative to celiac.  At 42 years of age, she was told by a doctor, “You’re just getting old-you need to learn to live with it!”  

Thankfully, she visited a naturopathic doctor who put her on a gluten-free elimination diet, which led to the NCGI diagnosis.  Within weeks of avoiding wheat, rye and barley, her energy came back and all symptoms disappeared.  Surprise, surprise!  

Ben, my 9 year-old tested negative to Celiac via blood test 5 years ago but was positive via biopsy.  Confusing?  Yes.  At the time, my son was also allergic to all protein so I wasn’t thrilled about the idea of taking gluten away too.  But, the most important test for us has been the gluten-free elimination diet.  Once we took the gluten out of Ben’s diet, he improved greatly.  He was able to go off of all of his prescribed medications and lost a persistent cough that had been hanging around for at least a year.  He is also slowly gaining some proteins back into his diet.  So, what is considered a true Celiac?  Who determines it?  How many of you consider yourselves true Celiacs and how many are considered NCGI?  Does it matter?  If gluten makes you feel bad, there is only one answer and that is NO GLUTEN!  What do you think?  How were you diagnosed?  Please share your stories here.

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7 responses to “Surprise Allergy! Non-Celiac Gluten Intolerance

  1. This totally describes me. I need to try 100% gluten-free.

  2. Wow, I had not seen any info about that. My kids both had autism so we started the diet for that reason, but the results were more than we ever hoped. Gone was the constant diarrhea, tummy aches, crying, and poor growth. Then they started talking and never looked back.

    I started cooking only GF about 3 years ago, but my dh and I still ate it out. Well, I decided to try being totally GF myself and what a difference. Gone was the fatigue, stomach upset, and overall yuck feeling. Late last year my husband had a celiac blood test that was close to celiac. The biopsy showed nothing. He is underweight and was losing about a pound a month. After being on the diet for the last 6 weeks, he has gained back 4 lbs. I would like for it to be more, but at least he is headed in the right direction.

    BTW, both kids have had blood work that came back negative for celiac. So while they may not have true celiac, they certainly have an intolerance. I guess we all do.

  3. Betsy, thanks for writing. I had not heard about NCGI either so this was an interesting find for me. I am so thrilled to hear your kids are doing well on the GF diet. It is great to have so many new GF products on the market these days too. I have noticed a huge increase in the past 5 years since we began GF. Hope your husband continues to get well. ~Patty

  4. I just left a comment on your blood testing post. Thank you so much for writing these blogs. People do not understand that the only thing that will tell you whether to avoid gluten is how YOU feel. The physicians, your family, your friends, nobody knows your body like you do. If you are a parent of a child with these types of symptoms, by all means try to get the diagnosis you need through the traditional means, but don’t count out simply trying gluten free dieting. Once you know the benefits, you will never go back. There is no such thing as “a true celiac.” There is no difference between someone with a NCGI and celiac disaese or dermatitis symptoms. Go gluten free, you’ll never go back.

  5. Kathleen Lilly

    I was so sick for two weeks straight that I couldn’t eat, so I wound up in a Gastroenterologist’s office at the advice of a friend. He immediately suspected a gluten intolerance. While the bloodwork came back positive, the biopsy came back negative. I have been gluten free now for two years and definitely feel ALL of the side effects if I ingest even the smallest bit of gluten. I don’t know if any of the tests are really accurate.

  6. Kathleen,

    I am so happy that you found a good GI and that a gluten-free diet is helping you. I think we will be seeing a lot more people in the future being diagnosed that are being missed currently.

    Stay healthy. ~Patty

  7. 2) One large boiled egg which is sliced up and sprinkled with cumin and salt can be beneficial for your health.
    You do not have to go into the dietary plan right away.

    Many non-celiacs and individuals that are gluten tolerant
    are switching to a gluten-free diet as well.

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