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Britgirl

By Britgirl
in Coping with Celiac Disease

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Britgirl Rookie
Britgirl
Posted

Hello!

Nice to meet everyone :) I just got my diagnosis yesterday which was a complete surprise to me. Can someone explain to me what it means exactly? My MD said I am not gluten sensitive, rather completely gluten intolerant and producing antibodies to the gluten antigens. I assume this means full blown celiac, rather than just a sensitivity? I am a little confused on the two. My mother is a full blown celiac and had been gluten-free for the past 10 years, so I have some knowledge of it.

I also have hypothyroidism, Lyme disease and am pre diabetic (!!) I am a little emotional and overwhelmed right now, but am eager to get on the right track and get healthy again. If you can share your knowledge and insights I would really appreciate that. Thanks!

~Britgirl

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Jestgar Rising Star
Jestgar
Posted

I'm glad you found us, and welcome! :)

celiac disease can be measured by some form of testing (antibodies or biopsy) and gluten intolerant means you feel bad when you eat gluten, but they haven't figured out a lab test for it yet. :P

Britgirl Rookie
Britgirl
Posted
  • Author

Ah, so I guess I am celiac then. I am still learning, even after all these years with my mum being a celiac. Who knew? lol

saintmaybe Collaborator
saintmaybe
Posted

Hi, hello, welcome! Even though I'm a fairly newcomer here myself! THAT is along string of diagnoses, but they are all manageable.

It does sound like you are full blown celiac, instead of intolerant. This is made even more likely by the genetic connection to a first-degree relative (your mom). If you've been given the go ahead, you can start eating gluten free now, but don't do it if you have more blood testing or biopsies coming up. The gluten free diet will quickly result in false negatives.

I'd say your Mom, as a long term sufferer is probably a great resource for living with Celiac, as opposed to those of us who are "building from the ground up," as they say. Ask her what foods she eats, what supplements she takes. It may be that some of her additional intolerances may be YOUR intolerances as well.

The pre-diabetes will resolve itself with strict adherence to a gluten free diet, AS LONG AS you are not eating a ton of gluten free replacement foods. By this, I mean breads, crackers, cookies, cereal bars, etc. that have either been processed to have no gluten in them or have been made with gluten free flours. Both have very, very high glycemic indexes.

I'm not saying no sugar, ever. But, be mindful, and stick to whole foods, fruits, vegetables- with the breads, pastas, and desserts as an occasional treat.

As for the Lyme- depending on the progression and severity, I do believe there is a low inflammation diet that will help with the symptoms. In addition, you'll be put on a long course of antibiotics, during which it's highly highly recommended you don't consume alcohol, get plenty of sleep, and take preventive probiotics. If you can handle it, I also suggest yogurt with live cultures. The antibiotics are long, very stressful on the body, and throw off the intestinal flora quite easily. You may easily develop a Candida (yeast) infection, which can turn systemic. An ounce of prevention is worth twenty pounds of cure, in this case!

Visit the boards, ask many questions and often. No question is too trivial. Most of us got into trouble by doctors and family members minimizing our symptoms until their severity simply became too great too ignore-- by which point, a great deal of physical damage had already been done.

kwylee Apprentice
kwylee
Posted

I think I must be a strange case.

Last year I tested postitive to gluten antibodies, and felt much better removing all traces from my diet. But about 6 months PRIOR to that, I did have a biopsy and was celiac negative, blood was negative, with everything looking fine with villi (my symptoms were not intestinal at the time, only neurological, and it was just a hunch on the part of a doctor amid a bunch of other tests). Even months later when I tested positive to antibodies, my intestines and villi, nutrient absorbtion, etc., looked fine.

So this has always confused me as well. I'm not sure how this works, but I think science has a lot to learn about gluten and what it attacks and most importantly, WHAT WE CALL IT. I have read that I am classified as non celiac gluten intolerant, but not sure it matters, because the prescription is exactly the same - remove gluten.

I will say this, now that I am off gluten/dairy/soy for well over a year, my stomach is much more sensitive and I've even had to be treated for excess stomach acid. I am wondering if my system had been working overtime for years trying to keep my intestines well.

Bottom line: stop ingesting gluten.

Britgirl Rookie
Britgirl
Posted
  • Author

Thanks guys, this is very helpful indeed. The only reason we found out I was making gluten antibodies was because I was seeing a Lyme Literate MD to keep my Lyme Disease in check. I am very grateful to have found such a doctor who caught a ton of other things my PCP did not. I actually DO have a candida infection from just 2 months of antibiotics and am cramming 55 billion CFU's of probiotic everyday as well as taking Diflucan.

My diet is getting a complete overhaul this month. No more sugar!! Plenty of whole foods, fruits, veggies etc Have any of you done the Primal or Paleo diet? It's very similar to gluten-free, but eliminates ALL grains.

kwylee Apprentice
kwylee
Posted

Have any of you done the Primal or Paleo diet? It's very similar to gluten-free, but eliminates ALL grains.

I feel great on Paleo now, even if I sneak in a bit of rice or even corn here or there. But I recall trying this a few years ago, before getting the gluten out of my system and I always felt horrible after a few days and I'd stop. Looking back, I suspect it's because I was probably instigating gluten withdrawal, which I did have when I went gluten free, but it cleared up pretty quickly and was well worth it.

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Britgirl Rookie
Britgirl
Posted
  • Author

I feel great on Paleo now, even if I sneak in a bit of rice or even corn here or there. But I recall trying this a few years ago, before getting the gluten out of my system and I always felt horrible after a few days and I'd stop. Looking back, I suspect it's because I was probably instigating gluten withdrawal, which I did have when I went gluten free, but it cleared up pretty quickly and was well worth it.

Oh that's great to hear. I've been doing a ton of research on it and it seems like the way I want to go with things. It seems healthy and easy to do given my current state of things. I picked up Everyday Paleo and I've been reading Nom Nom Paleo for ideas.

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