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Anyone have celiac?

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Old 09-21-2007, 10:10 AM   #1
Join Date: Mar 2006
Location: Canada
Posts: 398
miyu HB Usermiyu HB User
Anyone have celiac?

Is this a digestive disorder or a digestive disease. I’m sure its a disease because you are born with it.

So I have always has Celiac but just got diagnosed with it, and it makes sense looking at all the different symptoms I have gone through my whole life. Only I’m trying so hard to stop eating gluten and I’m having a really hard time with it, so anyone who has this and has it under control, can you help me? Or if you know a lot about gluten.
Like I was told no more bread, but does that include anything with wheat? Like all breakfast too with wheat in it? Because I need more fibre, and its hard to find things that are high in fibre but have no wheat. Does all wheat have gluten in it, or just some wheat?
Also does broccoli REALLY have gluten in it? it’s hard for me to believe. And i love that stuff too.

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Old 09-22-2007, 02:53 AM   #2
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Join Date: Mar 2007
Location: Pennsylvania
Posts: 698
Nyxie63 HB UserNyxie63 HB User
Re: Anyone have celiac?

Hi Miyu!

Don't know if I have Celiac yet. Had an endoscopy recently and dr did a biopsy of my small bowel to be tested for Celiac. Unfortunately, I don't get the results until I see him on Oct 3rd. Also found out that only 30% of those who test positive for Celiac through blood testing will show villi destruction, so I'm expecting a negative result, even though I may still have Celiac. However, in the meantime, I've been kinda preparing myself, just in case.

I've read where its considered to be an auto-immune disorder. Most people who have Celiac also have others in their family who have it. Those who get Celiac tend to have two things in common: a genetic predisposition, and a trigger of some sort. The trigger can be environmental (as in overexposure to wheat), situational (severe emotional stress), physical (such as a pregnancy or operation), or pathological (a viral infection). As many as 40% of people who are dx'd with Celiac never show any of the physical symptoms associated with it.

There are quite a few Celiac support organizations that have excellent information on the condition, including foods to avoid, tips to avoid cross-contamination, lists of gluten-free products, recipes, lists of restaurants that offer gluten-free menus, and so forth.

Celiac isn't an allergy specifically to wheat. Its a sensitivity to gluten, a protein found in several grains, including wheat (and all its relatives like spelt and kamut), rye, and barley. Some people also react to oats, some don't. Its essential to remove all gluten from your diet. Gluten can be hidden in products, so its good to understand what you're looking for. It can also be listed as TVP (texturized vegetable protein), malt, vegetable starch, etc. If you don't already, learn to read labels!

You can still get a good amount of fiber in your diet by eating grains like rice, amaranth, millet, and corn, if you're not allergic to any of these. Most nuts and seeds are ok. Beans and other legumes are fine, as are potatoes and yams. All fruits and veggies are ok. You can also add a product like Fiber-Sure, which is gluten-free.

Broccoli doesn't contain gluten. The only folks who really need to avoid raw broccoli are those with hypothyroid issues. Once its cooked, the substances in broccoli that can supress thyroid function are destroyed and its ok to eat.

I hope this helps.

Last edited by Nyxie63; 09-22-2007 at 03:04 AM. Reason: Added more info

Old 09-22-2007, 07:20 AM   #3
Join Date: Mar 2006
Location: Canada
Posts: 398
miyu HB Usermiyu HB User
Re: Anyone have celiac?

well thanks for the tips. learning how to read lables, I don't know how, but I am trying.

and thats funny, I had to be tested twice. because the frist bood test was negative, but the doctor couldn't figure out why I wasn't absorbing my vitimins, when I take daily pills, and everything was negative. negative negative,.. your fine. I asked her to take the test again, and upped my gluten in my diet. just ate more bread and pasta. because I had already taken it out of my diet for a while because, someone here told me I could try it to help with my attention span. as well as other symptoms. and it was positive. but I think my doc. is still unsure about that. but she has not asked me to do the tests you are doing. and I will see her again next month.

so I asked what do I do, to make it better so I can feel better. and she said "stop eating gluten" and I said. but I have, and I was still feeling crappy. and she said. you must still be eating some. stop eating broc. and col. as well. so I said "that has gluten?" and she said "yes" so that is strange, maybe she thinks I have a hypothyroid issues aswell, and is not telling me. lol.

but I'm going to tell her that I have stopped as much as I can, but I really need help with this, the thing is I'm not sure if heath care will offer a diet specialist, to help me with my difficult times. and some symptoms are better, like no more wet poo's. lol but somethings are still bad. run down, tired, always sick. boloted, stomach extended, and gasie.

I live in a small town also, not alot of gluten free stuff. the one time I saw gluten free bread, it was 5 bucks compared to the regular 1.50 I spend. but I don't miss bread. I miss breakfast, and pasta... so I usually cheat.

Last edited by miyu; 09-22-2007 at 07:27 AM. Reason: type-os

Old 09-22-2007, 07:35 AM   #4
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Nyxie63 HB UserNyxie63 HB User
Re: Anyone have celiac?

If your doc thinks you have thyroid issues as well as Celiac, ask her to run TPO and Tg antibodies tests. Quite often, those who have Hashimoto's (an autoimmune thyroid disease) will have Celiac as well. Also see if your health care will pay for a nutritionist. They'd probably be the best source to help you work out a diet plan, as well as point out possible danger foods.

Check your local bookstores. There are most likely books there on Celiac and they might even have some gluten-free cook books. If the stores don't carry them, they might be able to order them for you. A lot of Celiacs make their own bread with bean, rice, and soy flour (although if you have a thyroid problem, avoid most soy).

Breakfast is usually the most difficult thing to figure out. If you don't react to oats, then making rolled oats with some cinnamon, vanilla, flax seeds, and honey would be good. You could learn to make your own gluten-free muffins. It just takes being informed along with a little creativity.

Good luck!

Last edited by Nyxie63; 09-22-2007 at 07:36 AM.

Old 09-25-2007, 08:18 AM   #5
Join Date: Aug 2006
Posts: 88
gclaec HB Usergclaec HB User
Re: Anyone have celiac?

I have Celiac Disease and other autoimune disorders. Celiac disease Genetic, yes you are born with it, some people show no signs some people strugle in life many years before being diagnosed. 1 out of 133 people in the US have Celiac disease and 97% are still not diagnosed. It is very hard when you are first diagnosed I too was in "denial" for a long time. I assure you, once you take a positive approach it is not so bad.

[SIZE="4"]You can not EVER eat anything containing Wheat Barley Rye [/SIZE](sometimes oats)... I suggest you get the book by Dr Peter Greene at Columbia University Hospital. Also every area has a support group, try to find your local Celiac support group, or even Gluten Intolorance support Group in your are. These people will walk you through everything and help you. If you need help you can call the Celiac Disease Center in NY at Columbia University and they will help you find support group in your area.

It is imperative you DO NOT EAT ANY GLUTEN!!!! Although you may or may not have immediate response to it your insides will, 1/8th of a teaaspoon of gluten damages your system for 6 months. If you continue to eat GLuten and have celiac disease, you can cause irreversible dammage like Lymphoma, osteoperosis, and other autoimune diseases, like Lupus, Thyroid problems.

There are many specialty stores that selll Gluten Free products. We eat everything just a different way. It is also a great thing to invest in a bread machine and buy the bread mixes at the health food store and make the bread fresh, it taste so much better. Tinkiada pasta is the best gluten free pasta (made with rice flour)

I dont know how old you are but it would be a good idea to let your family know that they should be tested. It is a genetic disease which means it was passed down to you, and you can pass it down to your children. My son and daughter both have celiac, I was adopted so I couldnt trace it back. The worste part about celiac is getting started, then it all falls into place. It is a LIFELONG diet change and you can never CHEAT. I hope this was helpful , let me know if you have any other questions I would love to help.

The biggest problem with celiac disease is the Dr's dont know (, nor do they want to ) much about it. Drug companies pay dr's to promote their medications, celiac has no drugs and once diagnosed there is not much testing and follow up needed. So Dr's make more $ not diagnosing people, and running more and more test and prescribing more and more medications. I suffered for 9 years with "unknown" GI problems, then WOW , it wasnt in my head, or IBS , look it is Celiac, positive biopsy and blood test, Dr's dont test for celiac, and if you are not looking for it , you dont see it. Good luck, and please get on the diet.

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