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Should I Be Gluten Free Too?


kaleesmom

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kaleesmom Newbie

Hi. I am new to this forum, but am very excited to tell my story. I feel like I, too, can help a lot of people through discussing what my family has been through. My daughter, now 2, was diagnosed with celiac disease. Knowing that it is genetic, I was tested and I encouraged my family to be tested as well. My mother, who has had GI problems since my sister was born (27 years ago) had negative blood tests. She tried the gluten-free diet anyway, and feels amazingly better. My daughter's blood tests were negative also (she was diagnosed by biopsy). My blood tests were negative as well, but I don't think I have experienced any symptoms, other than occasional fatigue. Given all of the complications associated with celiac, its hereditary nature, and the fact that my whole family has had negative blood tests, should I be on a gluten-free diet too?


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Lisa Mentor

That's a good question. I suppose it depends on your health history. Many people have been diagnosed with Celiac as a secondary illness to arthritis, lupus, diabetes, thyroid issues... In addition, there are several people on this Board who are asymptomatic.

I believe 20% first degree relatives will develop Celiac.

But, if you are otherwise healthy, perhaps there is no need to be on the gluten free diet, although it is something to be aware of for the future.

heathen Apprentice

My paternal grandfather is diagnosed, and I am diagnosed, but my dad's blood tests are negative. The genetic link isn't really well understood, and there definitely is an environmental trigger that is also not well understood. The current thinking is shifting to think of gluten sensitivities on a spectrum (sort of like autism) with some people having a sensitivity (like lactose intolerance) and others having full-blown celiac disease with the antibodies. There's still so much more to figure out. You and your family might want to be vigilant of any unexplained health changes, and it might be great for the family to go mostly gluten-free if only for helping your daughter with the transition. Best of luck!

psawyer Proficient

Having the genetic factors means you have the potential to develop the disease, but the majority of those with the genes do not. Even with identical genes, such as in identical twins, there are examples where one has celiac disease but the other does not.

If you are concerned, you can avoid gluten. The gluten-free diet is not dangerous or harmful in any way. Because it keeps you away from fast food places, it can be much healthier in many ways. ;)

sugarsue Enthusiast

My 6 yr old is highly gluten intolerant (possible celiac) and can't have even a spec of gluten. My 7 yr old is not as sensitive but her symptoms have been greatly helped by going gluten free. I am allergic to wheat. I never restricted it before I learned about the girls, thinking it didn't really affect me. But I found now that I don't eat it, I get horrible itching, less weight issues, no more sinus infections, no unexplained rashes.....

If I eat wheat, I itch for 12 hrs or so. I could cheat if I wanted to but it's not worth it to me. But also, it helps me to see what my girls will go through when they get older, the decisions they will be faced with, the temptations, the situations. It's not always easy and I like really knowing what that is like.

Anyway, that's just my experience. Now that I see how sick it makes my 6 yr old, it kind of feels like posion to me anyway and I don't have any desire to eat it. Good luck to you and your family with all these changes you are going through!

Susan

kaleesmom Newbie

Thanks for all of the information! I know my wallet and my scale would both benefit if I gave up Subway and Chipotle. ;) As of now, I luckily don't seem to have any symptoms or medical problems (except for fatigue, but I'm pretty sure thats a result of my 2 year old). :rolleyes: I may try the gluten-free diet for a few weeks just to see how I feel. Thanks again for the help and the support!

Pattymom Newbie

It might turn out to be easier to keep a 2 year old gluten free is there isn't much gluten in the house for her to decide to want. It's hard enough to find time to prepare one meal for a family, let alone a second gluten free meal that you tr to keep from getting contaminated--we tried that for the first month or so when i was the only one off. s much easier ot just make meals gluten free for everyone, then if your toddler wants what you are eating, they can always have some.

Patty


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ChemistMama Contributor

My son was diagnosed at 18 months, in the fall. After I was eating low gluten for about 6 months, it was spring, and me and the husband would sit on the porch and have a beer after a long day with the kids. Guess what? I increased my gluten intake, and lo and behold I got skin problems, which would eventually be diagnosed as DH. If I were you, based on your history, I"d go gluten-free too. Good luck!

PS...you can still go to chipotle, just make sure they change gloves and put everything in a bowl. Yum!

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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