Greetings, Diabetic Celiacs

Somehow the word has spread accross the Web that I am not only diabetic, but gluten-intolerant as well. I’ve noticed that a number of my online gluten-free friends (see new list in left-hand column, below) have linked back to me, as some kind of resource, I suppose. What can I actually offer on this topic?

For those of you unfamiliar with this disorder, let me start by explaining that it is, in many ways,Ps_i_love_you_2 harder than being diabetic! OK, no injections required. No ketones or hypo incidents or anything of the sort. But if you are *just* diabetic, you can still eat a sandwich. You can still eat a bagel. You can still go out in the world and order “real” food without getting sick. After 2-1/2 years, I have already forgotten what normal bread tastes like. (Note that the leading celiac magazine is called “Living Without” — for good reason.)

And once again, it was only through the Internet that I learned of the relationship between Type 1 diabetes and gluten-intolerance. Not one of my @#%$! doctors said a thing about it. So following my diabetes diagnosis, it took over six months to figure out what else was wrong with me. Aaacckk! Come to think of it, the best I can do would be to help others avoid this extended learning curve.

So on that note, here are a few “top tips” on gluten intolerance from my little corner of the world:

* TRY THIS:

- If you are experiencing sharp abdominal pain, cramps, chronic diahrrea, or persistent itchy skin rash, visit an allergy specialist (not your regular doctor!) to have blood tests for possible allergens

- If you are told there’s a 50% chance you may be allergic to wheat, do not hesitate! Try a gluten-free diet immediately, for at least 2 weeks, to see if your symptoms dissipate

- If you are still unsure and suspect celiac, ask your doctor to order the autoantibody test to be sure (a “small bowel biopsy” that can be rather unpleasant, unfortunately)

* VISIT THESE SITES:

- National Institute of Health/Digestive Diseases
- Celiac.com
- Celiac Chicks
- Gluten-Free Girl
- Recipes from a Gluten-Free Goddess

(Men welcome at all these sites, too, of course :)

* SHOP HERE:

- Gluten-Free Mall
- The Gluten-Free Pantry
- Gluten-Free Trading Company
- Gluten-Free Meals.com (delivered to your door!)

Expect to pay MORE for these special foods. But expect to FEEL BETTER and like it! (See the photo of me, in Palm Springs last week, feeling pretty darn good even after explaining to umpteen smiling servers that I really can’t eat that, because I am in fact, allergic to wheat!)

Finally, need to find a real-life gluten-free friend? Try Celiac Meetups to search for people with celiac disease near you. Nothing like a real-life buddy who shares your disorder to make you feel more “normal,” ay? Best wishes to all of you celiac diabetics!

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10 Responses

  1. Nick
    Nick May 7, 2006 at 9:53 am | | Reply

    Looking pretty darn good too!

  2. Jamie
    Jamie May 7, 2006 at 11:03 am | | Reply

    I have celiac as well – and have been living with it for almost seven years now.

    Thanks for the write up on it – educating the public on this disease is a big part of helping celiacs deal with this PITA disease. When my daughter was diagnosed with Type 1, I cried “Why couldn’t she just have celiac disease?? Why did it have to be Diabetes???” – but hearing it from your perspective is interesting – as I find managing Diabetes in my child more difficult than managing my celiac disease lol.

    I just hope that she doesn’t get both – but if she does, I can handle it :D

  3. Gene
    Gene May 7, 2006 at 10:32 pm | | Reply

    If you think you have celiac disease and start a gluten free diet, you will have to return to eating gluten before you can have diagnostic tests done. In the absence of gluten the antibodies that the tests look for disappear and your intestine will heal, making a biopsy inconclusive.

    It’s hard to say exactly what the time frame will be before the tests don’t work. I know people who have tried a gluten-free diet, found that they feel better and then had tests and still been able to get a definite diagnosis. The longer you are gluten-free before testing the less certain the tests will be.

    Frankly, it’s not a clear-cut choice. If you’re really sick and desperate for some improvement, it may be worth it to try a gluten-free diet. I you don’t have insurance and can’t afford testing you can try it and see if it works. On the other hand, the diet is difficult and in the long term you may find that knowing for certain you have celiac disease helps you stay on it. There can be legal advantages to having a clear diagnosis (for example, children will probably have much better luck getting support from their schools if they can get a letter from their doctor).

    So give it some thought and try to decide what is best for you and your situation.

  4. AmyT
    AmyT May 8, 2006 at 6:51 am | | Reply

    Hi Gene,
    Thanks, I neglected to mention that you need to have gluten in your system for the more rigorous test to work. But my understanding was that you only need to eat gluten a day or two in advance…?

  5. Jamie
    Jamie May 8, 2006 at 8:32 am | | Reply

    I heard if you go on a gf diet, but wasn’t officially diagnosed, but wished to be – you had to go back on gluten for FOUR months before blood test and biopsy. That is what my kids pediatrician had said ??!!

    Crazy, huh?

    The biopsy stinks – but that, in conjuction with the blood test is the only way to 100% confirm diagnosis as the blood tests are still not completely accurate (although they are working on that one).

    I noticed how you explain to people that you are allergic to wheat, rather than tell them you have celiac disease. I do the exact same thing – it makes things much easier as most people don’t know what CD is and to sit down and explain it while you’re trying to order a meal is a pain in the butt lol.

    Oh the joys!

  6. elle
    elle May 8, 2006 at 1:46 pm | | Reply

    we are hearing of more and more people who are wheat and gluten intolerent. is there any reason why these numbers are climbing or is it just that we are now aware of the syptoms? it’s great that there are so many resources now.

  7. JasonJayhawk
    JasonJayhawk May 8, 2006 at 10:11 pm | | Reply

    I just read that while Celiac’s is found in 1 out of 133 people in the general population, it’s more like 1 out of 10 in Type 1 diabetes. [source: some link off of CWD].

  8. Gene
    Gene May 9, 2006 at 5:55 pm | | Reply

    A “celiac challenge” (testing for celiac disease after you’ve been on a gluten-free diet long enough to heal) can run for just a few weeks or several months, depending on whether you show any symptoms (at which time an antibody test could be run to follow up with a biopsy if it’s positive). I expect you will get slightly different answers from different doctors, since there doesn’t seem to be any medical standard for it. And if you start feeling much better on a gluten-free diet, will you really want to undo it? Yet there are some really good reasons to get a definite diagnosis (for example, do you need to worry about it in your children?).

  9. Scott
    Scott May 10, 2006 at 5:31 am | | Reply

    One of the more interesting findings is that celiac disease often does not show any overt symptoms in a significant percentage of patients, therefore doctors often hesitate in doing any tests for the condition using the logic “if it does not appear to be broken, why even look for it?” — especially since insurance prefers not to pay for what they deem to be “unnecessary tests”.

    Columbia University has an informative website on Celiac disease, which I was surprised you don’t have listed among your links. The URL is as follows:
    http://www.celiacdiseasecenter.columbia.edu/A_Patients/A01-HOME.htm

  10. lori
    lori July 3, 2007 at 8:29 am | | Reply

    Does anyone know if the pump’s it’s injection site is gluten free? My little boy just started it and his antibody count is above 250 again!!!

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