Celiacs Disease- Where to Start?

I’ve been type 1 diabetic for 11 years. I’m first generation as there is no history of diabetes in my family. I’ve felt sick, fatigued, and have been showing many different symptoms of Celiacs disease for a few years now and I’m tired of being… tired.

So, I’ve been talking with a friend of mine who has Celiacs and I am interested to find out if I do as well. He mentioned that doctors will typically take a biopsy of your small intestine after you’ve ingested large amounts of wheat.

I’m scared to do that. :*(

So, my friend said that I can just change my eating habits for a few weeks and see if it makes me feel better. If I do feel better, slowing introduce gluten into my diet again and see if it makes me feel worse.

Where do I start?
What is the main food that I should stop eating?

People have said, no flour, no concentrated fats. But, what am I really looking at here? For those of you who are diabetic and celiac, what do you eat??? I feel like I already spend so much time on what I choose to ingest… but I’m really tired of feeling sick.

Please help.


I have an internet friend who’s a type 1 and celiac if you do’t get any responses check w/ her. she’s very cool

haha Danny. thanks!

Here is a link to great info on the Univ of Chicago Celiac Center website. The list is pretty long…but, at least you can review it and cut and paste a list for use. I found Celiac 101 and the diet section very helpful:) The allergy is actually to the “protein” in certain grains, so you must avoid anything made w/ the grain. Obvious category of foods to avoid are wheat based breads, cereals, etc…but, do check out the long list so you are not getting allergen from some other source…like in a convenience food (thickeners, etc.).

I was able to eliminate most of the gluten in my diet by going low carb…but, many celiacs enjoy a variety of baked goods …just made from different grains. For example, Bob’s Red Mill makes a good sweet white sorghum flour mix for scones and it is available in most grocery stores. Good luck to you Marps:)

PS: they sponsor a free screening at the center (in Chicago) in Oct of every year…for those who live in that neck of the woods:)

Marps, have you ever had blood work to test for celiac?

Most people who have celiac test positive in blood work, although a VERY SMALL percentage of people who test negative for celiac via blood work test positive in the endoscopy procedure you described above.

I would also recommend seeing a gastroenterologist. Instead of doing some random at home test, if you can see a GI then go see one, he/she will be able to get a better idea based on your symptoms.

Celiac is a serious disease and if you have it, I wouldn’t go messing around with your own self diagnosis. A consultation with a GI doesn’t mean you’ll have to get an endoscopy at all! So don’t think about that yet.

Make that appointment!

Nowadays there is a blood test that detects Celiac disease, so it is a lot easier than when I was diagnosed in the 1970s. Also the biopsy does not need a lot of wheat digestion first, in fact I was fasting.

Foods to avoid: anything with Wheat, rye or barley.

There are also Celiac support groups, just Google it.

Sophie- Thank you. I am seeing my Endo mid January and I have already alerted him to the symptoms that I’ve been experiencing. Hopefully he will have some answers for me.

I wasn’t aware that blood work could detect it, so that’s really good to know.
I am really just rooting around in the “dark” so to speak because I don’t want to feel sick anymore. I had a previous discussion posted a little while ago and I explained my symptoms and many people suggested that I get checked for Celiacs disease. At first, I balked and thought “No way- I don’t have that” but when I went to numerous websites, I noticed that I DO have many of the symptoms and that many doctors don’t even think to check for it unless it runs in the family genetics.

Well, Type 1 doesn’t run in my family bloodline either, so I just got lucky with that one!
I also read on celiac.com that 50% of type 1s are celiacs as well, but most don’t know it.

So, I’m just trying to figure this all out.
All in all, I just want to feel better. It’s been YEARS since I’ve felt really GOOD.

No disrespect to those who are already dealing with Celiacs, I don’t mean to make it sound like it’s no big deal. I just know a few people who are diagnosed Celiacs and they made simple changes to their diets and it removed their symptoms. I’m hoping that I can find something (some cause) that will help me to do the same. :slight_smile:

Amy over at DiabetesMine also suffers from Celiacs I believe, you might find some good info over there

Hi Scott. Thanks! Your networking is amazing.
Your link didn’t work,though. Can you provide another?

Bad URL, Bad!!! DiabetesMine

Definitely see your endo! When I was dx’d they wanted me to be checked out for celiac right away. 6 months later, I finally got in to see a GI specialist. They will first do a genotype test to see if you have the genes for celiac (a number of which are also genes for type 1, hence many type 1s having celiac) in addition to some other blood tests, probably. Then, based on these results and your symptoms, they may want you to have a biopsy to confirm a diagnosis–however, you can choose not to have it.

To have a full diagnosis of celiac, you need a positive biopsy. However, for myself, given the symptoms I got when I would eat gluten, along with the test results, it meant that there was a very high probability that I had celiac. The next step would have been a biopsy, but I chose not to have it. I was already gluten free (though I was not quite as strict as I now am), and in order to have a biopsy, you need to have been eating gluten for at least a month (possibly longer)–given how sick it makes me, I was not going to put myself through that when we already knew I in all likelihood had the disease.

Your endo should be able to talk with you about these issues, or at the very least get your set up with a GI specialist who can work through this with you.

If you do end up having celiac, know that it is totally manageable. It takes a bit of getting used to, but there are so many good gluten-free options out there and as with everything it soon becomes normal. Good luck!!

My Dr. thought that I had it too and it sucks! Gluten is in just about everything you eat that is a starch… I cut ALL Gluten out of my diet and just stuck with fruits, veggies, meat, and dairy… You can make potatoes for your starch but stay away from everything else starchy.

Well my Dad is a coeliac and basically small quantities of flour will make everything go through him. For years he could eat and never put weight on. He also had the worst temper , which is part of the disease.

its an allergy to gluten which means eliminating wheat from your diet entirely. trouble is lots of processed foods may contain gluten. In the Uk at least there is a crossed wheat symbol on cans of product which are gluten free. heinz beans for example. Thats another problem that two similar products may contain gluten or not.

My dad will get stomach cramps if for example he eats chips contaminated with batter. it’s not all flours thou corn flour is safe and useful for making gravy.

there is gluten free rubbery bread and other products but they usually taste like … and rarely what they replace.

hope this helps

Most people with celiac should be good with rice.

Wheat, and for some people oats, like oatmeal.

Also, if you are allergic to oatmeal, make sure any soap or lotion you use doesn’t contain oatmeal, and if it does, wash your hands before you eat.

My mother’s doctor said that if you change your diet before you are tested, it can give a false negative reading, because the altered diet makes your body not release the same toxins, or whatever, but she was tested a few years ago. I’d ask about that, before you get tested, if you get tested.

I hope you don’t have it, but if you do, at least you know what is wrong. Good luck.

Thank you Baby Tee

I will be talking to my doctor in mid January to figure out what’s going on.
And it’s completely true- I just want to know what’s wrong.


There are so many products out there now for Celiacs. Whole Foods carries a lot of gluten free products. There are also many, many gluten free flour mixes, as well as ways to make your own gluten free mixes out of alternative flours. All of Enjoy Life products are gluten free (and free of the top 8 allergens). Tikyada makes great rice pasta, although it isn’t a great choice for diabetics as it’s even higher in carbs than wheat pasta.

You can also search for gluten free bread recipes. They have a bit of a different taste, and tend to be dense, but aren’t bad. I’d recommend avoiding recipes with a lot of millet flour. Some is fine, but millet has a bitter taste. Rice flour, almond flour, and coconut flour are all quite good.

Also know that most oatmeal is cross-contaminated with gluten. There are some brands that aren’t and some brands that are specifically marketed as gluten free. I really like McCanns quick cooking Irish oatmeal. It doesn’t say it is GF on the box, but after reading about it, I found that it was safe.

You are very right about Whole Foods. What makes it easy shopping there is that they also place small placards in front of the gluten free products (at least at my store), which means that you don’t have to hunt around looking at the ingredient labels. If you ask at the information desk, they also have an entire shopping list of all their gluten free products. How convenient is that?

Wow! That is amazing. I didnt know that. I wonder if any grocery store around here does that too?

I’ve been Type 1 since I was 14, so my mother went to all the restaurants around our area and got a nutrients list for all of their meals. McDonalds, Taco Bell, KFC, Dunkin Donuts, Burger King, Wendys and even Friendlys all had the information under the counter in a brochure. It was neat knowing that even though I had to be careful about what I ate, I could learn the carb break downs and fat content and figure out a way to still be a “normal” teenager who liked burgers and fries. :slight_smile: