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Concern

solo

By solo
in Coping with Celiac Disease

Recommended Posts

solo Newbie
solo
Posted

Hello everyone. My main concern is I have an inkling I have been misdiagnosed. I was reading a site on the symptoms of Celiac Disease, and I have many of them. But I am 28 years old, and was diagnosed with Cystic Fibrosis in 1979. About 10 or so years ago I aquired type 1 diabetes as well. But for the weird part, as you may know Cf mostly effects the lungs. I have had much luck in the breathing department, but I have terrible digestive problems. In the 3 months when I was born, I had 3 surgeries alone, and over the years more surgeries for bowl obstruction. I must take digestive enzymes to properly digest food. Over the past week or so, I have been eating mostly organic and a few gluten-free foods, and feeling better. I don't know if this is a coincidence or what?

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Juliebove Rising Star
Juliebove
Posted

Or... It could be food allergies. My daughter is allergic to both wheat and gluten. Or... You might have gastroparesis from the diabetes. I do. You might want to see a gastroenterologist. But at least you're feeling better!

RiceGuy Collaborator
RiceGuy
Posted

Welcome to the board!

As is often said around here; if the gluten-free diet helps you to feel better, then go with it. Many of us (including myself) are self-diagnosed. So I'd say try going completely gluten-free and see what happens. However, you may find cutting out a few other things helps too. A lot of people find dairy is a problem too.

Hope you get it nailed down soon!

solo Newbie
solo
Posted
  • Author

Thanks for ther replies. I will stick with the gluten-free diet for awhile to see if my symptoms get any better. I was reading the ingredients on one of my organic pop-tart packages and it listed organic wheat gluten- is that bad? I would think since its organic its ok, I don't know, you guys are the experts. Opposed to food allergies, I had these digestive problems long before I contracted diabetes, and the doctors surgically removed some of my colon so I constantly have a bile overgrowth, so that means I have gas constantly.

Piccolo Apprentice
Piccolo
Posted

Solo,

I just noticed you are going gluten free. You stated that your pop tarts have wheat gluten in them. They are not safe. Being gluten free means not hving anything with Wheat, barley, rye, and sometimes oats.

Susan

solo Newbie
solo
Posted
  • Author
Solo,

I just noticed you are going gluten free. You stated that your pop tarts have wheat gluten in them. They are not safe. Being gluten free means not hving anything with Wheat, barley, rye, and sometimes oats.

Susan

O, ok, thanks. I just figured since they are organic they are ok. Man, looking at alot of my food it seems the ingredient table lists organic wheat on so many. I am already restricting my diet, this is gonna be really hard staying on a gluten-free diet.

Edit: I am heavily debating that I might go to the doctor tomorrow and get tested for Celiac disease. Does anyone think it will come out positive anyway just because of my digestive issues with CF?

Adelle Enthusiast
Adelle
Posted

1stly welcome.

2ndly, expect some resistance from your doctor about celiac testing. Hopefully they will "let" you get tested (that means a full blood panel followed by an endoscopy and biopsy). Just know that the tests can't rule celiac out, they can only rule it in. So even if your tests are negative, it just means they didn't happen to catch it. I really hope you'll follow the diet (after testing so that the testing is as accurate as possible) and see if it helps anyway. I had + bloodwork but my doc said it was "silly" to go gluten-free and that since the problems I had (rapid heart rate, breathing issues, ataxia, peripheral neuropathy, narcolepsy, extreme weakness, etc etc) were all in my head, the died wouldn't do anything. This was after I was gluten-free for 1 week and had walked into his office unaided (I had been using a cane or a walker, I was 21) for the first time. Yeah, all in my head <_<

Okay, about the diet. Organic has NOTHING to do with gluten free. Nothing. Most organic pre-packaged food will contain gluten simply because most pre-packaged food in general has gluten in it. So you're going to have to mentally separate those two ideas. An easy way to try the diet is to eat SUPER simply. Nothing from a package. Just cook up some meat, steam some vegis, and maybe some rice or quinoa for a while. Then you can start reading ingredients on packages as you feel comfortable doing so. There's also the matter of toiletry products (lotions, makeup etc) being gluten-free, and cross contamination in your own kitchen. Feel free to ask and ask. NO QUESTION is stupid!!!

I know that some people have a huge compiled list of products (sauces etc) that are gluten-free so maybe someone will post some???

I'm so glad that you're questioning this diet. It really does help TONS of people. Even if you don't have celiac itself, gluten could be affecting your overall health! Welcome! Ask every question you can think of (cause someone on this board has been there before!), because you are SO worth being healthy!

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solo Newbie
solo
Posted
  • Author
1stly welcome.

2ndly, expect some resistance from your doctor about celiac testing. Hopefully they will "let" you get tested (that means a full blood panel followed by an endoscopy and biopsy). Just know that the tests can't rule celiac out, they can only rule it in. So even if your tests are negative, it just means they didn't happen to catch it. I really hope you'll follow the diet (after testing so that the testing is as accurate as possible) and see if it helps anyway. I had + bloodwork but my doc said it was "silly" to go gluten-free and that since the problems I had (rapid heart rate, breathing issues, ataxia, peripheral neuropathy, narcolepsy, extreme weakness, etc etc) were all in my head, the died wouldn't do anything. This was after I was gluten-free for 1 week and had walked into his office unaided (I had been using a cane or a walker, I was 21) for the first time. Yeah, all in my head <_<

Wow, thanks for the reply. I don't know if I'll have to "worry" about a doctor letting them stab me in the arm to take some blood, after all I am the patient, and I have money. Money makes the world go round, and it talks. If I told the doctor that I would pay them to sing the star spangled banner, I'm more than sure they would. I can't believe you had to use a cane or walker at 21, was it because of Celiac? At times, more recently since I am older, my legs are getting harder to pick up and my blance is erratic.

Okay, about the diet. Organic has NOTHING to do with gluten free. Nothing. Most organic pre-packaged food will contain gluten simply because most pre-packaged food in general has gluten in it. So you're going to have to mentally separate those two ideas. An easy way to try the diet is to eat SUPER simply. Nothing from a package. Just cook up some meat, steam some vegis, and maybe some rice or quinoa for a while. Then you can start reading ingredients on packages as you feel comfortable doing so. There's also the matter of toiletry products (lotions, makeup etc) being gluten-free, and cross contamination in your own kitchen. Feel free to ask and ask. NO QUESTION is stupid!!!

I know that some people have a huge compiled list of products (sauces etc) that are gluten-free so maybe someone will post some???

I'm so glad that you're questioning this diet. It really does help TONS of people. Even if you don't have celiac itself, gluten could be affecting your overall health! Welcome! Ask every question you can think of (cause someone on this board has been there before!), because you are SO worth being healthy!

Geese, it sounds like there's so many restictions on what you can eat. With CF and diabetes I am already fighting to maintain/gain weight. It's like I'm going to a gunfight with a knife. I sincerely hope that they were wrong diagnosing me with CF in 1979, and it really is Celiac. Afterall, I didn't have any lung problems till I was in my late teens, and even if someone healthy is bombarded with nebs and antibiotics every day for years, they will exhibit sideeffects. Diagnosing something in 1979 is a bit like a caveman putting together an erubix cube.

Thanks for the info. B)

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

If you can go to the doctor tommarow then do it!!! or at least get in BEFORE you go gluten-free. if you go gluten-free before getting tested it could turn up negative. Be glad you are in the position that you recognized you may have celiacs and can make a doctors appointment. I had all the symptoms of it for over 6 years. by the time I recognized it could be celiac, I didn't have doctor and and my school health center at college just laughed at me because I said I suffered from gas/bloating/ diarhea. So I got fed up and went on the gluten-free diet because I didnt have anyone to help me. I was so sick on gluten at the time I just had to get off of it, now I'll never no for sure if I have celiacs or not because I cant go back, gluten makes me too sick. I feel better either way, but still its nice to no FOR SURE if you have it or not. It also makes the explanation to family easier if you are officially diagnosed :)

good luck, feel better!

solo Newbie
solo
Posted
  • Author

Thanks, but I was just at my mother's house and we had quite a chat on this subject. She tried to hammer home that I'm a hypochondriac and when I was real young she tried to tell the doctor's to test me for it and I guess the doctor's were so sure that it was just CF so they blew it off. I have a doctor's appointment next month with my CF doctor, so I'll be sure to bring this up with him. He is very cool and understanding and listens to my concerns, so I'm sure he'll give me the answers I'm seeking.

dollamasgetceliac? Explorer
dollamasgetceliac?
Posted

Hi;

I just want to let you know that Gastrointerologists often mistake Crohn's for Colitis or IBS. Many Crohn's patients have part of their intestines removed. The wounds are deeper and can be spread out over the entire digestive system. Also Crohn's is becomming more commen, Children can get it at any age.

I am not a doctor , but I know lots of them.

Food allergies are very commen too, you need to be tested for that and even if the tests are negative you still may be allergic to some foods.

You ca visit the Food and Allergy Foundation

Most importantly is that you get a blood test and or a proper genetic test and perhaps a biopsy.

I think that if you have relatives they might want to know if you have Celiac that increases their risk for getting it. Dr. Peter Green writes a very good book On Celiac Disease a hidden Epedemic.

Read that also I started a thread here on the Topic Celiac and Diabetes , I started in Prediagnosis and moved it to Celiac and related Diseases. There are others here who have Crohn's,Food Allergies, Diabetesand Lyme just to name a few.

It is sad to hear yet another person having to explain their situation to friends and family and that they think you are a Hypocondriac. How could you be a Hypocondriac at 3 months. It would be nice if you added a post on the Diabetis a Celiac thread so that perhaps your input can help us all.

Thanks

Adelle Enthusiast
Adelle
Posted

Don't worry about the diet too much. It's hard at first, but within a few months, it's as easy as gluten-free cake!! Ha ha!! It's not like all you can eat is unprocessed foods, but if you don't want to have to worry about reading ingredient lists for a while, it's the way to go! If you can find a like, whole foods or some other "natural" grocery store they'll probably have a gluten-free foods list.

I really hope it is that easy for you to get tested. For the blood test I had to threaten not to leave the office. He threatened to have me arrested. I said okay, but I'd make a scene for all of his nice little patients in the waiting room. He then ordered the blood test. Often, it's NOT that easy. But I hope it is for you!!

Don't listen to your mom. I don't speak with my family at all anymore. My mother did the exact same thing, and I just can't allow someone in my life who would think that about me. I'm not saying you have to cut contact with your fam like I did. But don't allow their opinions to dictate YOUR health!!

Good luck!

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