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stephen11

My Celiac Problem

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I am having a terrible time with my celiac disorder. I am trying to eat all the right food the doctors say that I should be eating but the problem continues. Hourly I have uncontrollable gas which is most embrassing for others to hear while you are at work. I also have ever 2 or 3 days frequent bowel loose problems even when I am walking down the street, which can cause my pants and underwear to be a mess. I take some over the counter stuff for it, to relive the problem temporay but I just can't do it every day. What am I going to do.. I am also concerned that this might lead (when I get older) to more medical problems than I am having now. :(B)

I am writing this e-mail because I want to hear from others who have the same problem and professionals who have study the situation. Is this any doctor out there that might give me some advise. Anyone having any quick solution idea's would be great too. :):D

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I am having a terrible time with my celiac disorder.  I am trying to eat all the right food the doctors say that I should be eating but the problem continues. Hourly I have uncontrollable gas which is most embrassing for others to hear while you are at work.  I also have ever 2 or 3 days frequent bowel loose problems even when I am walking down the street, which can cause my pants and underwear to be a mess.  I take some over the counter stuff for it, to relive the problem temporay but I just can't do it every day.  What am I going to do..  I am also concerned that this might lead (when I get older) to more medical problems than I am having now.  :(  B)

I am writing this e-mail because I want to hear from others who have the same problem and professionals who have study the situation.  Is this any doctor out there that might give me some advise.  Anyone having any quick solution idea's would be great too.  :)  :D

<{POST_SNAPBACK}>

Well, I'm not a dr, but I've had celiac disease for 9 years. You really didn't give much info - How long sick before dx, extent of damage, how long gluten-free? The results of going gluten-free vary w/everyone. Depends on the variables I just mentioned. And also, are you truly gluten-free? No hidden sources that you thought were okay, but not? Still w/ milk (celiac disease causes damage to the villi and makes the villi unable to produce lactase to digest milk products) - Have you checked any supplements you take? cosmetics, hair products, meds? Is your kitchen gluten-free? The healing process takes time, remember you didn't get damaged all in one night, so the reversing of the damage doesn't happen in one night. Hang in there!


gluten-free since Oct 1996

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i second nettiebeads--give us some more info...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Yep, more information would be good.

* How long have you been gluten-free?

* Are you certain that you are completely gluten free, having also eliminated hidden sources and cross-contamination risks?

* Do you have any other complicating medication conditions?

* Have you been tested for vitamin/mineral deficiencies?

* Have you been tested for other food allergies or food intolerances?

* Are you lactose intolerant?

* Are you on any medications or supplements?


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Ok here is some more information.

I think that I have only had it for about a year now. I guess that getting on a Gluten Free diet might be the answer but I take a lot of other medicines and I think that they might be causing the celiac. I know you are probably asking what med's do I take, I don't have the list with me but I could come back tomorrow and give you the list of med's I take. I think that the med's that I am taking are causing the problem more than anything else. Does anyone think that this is possible.

If it isn't the problem, then I would also need to figure out how I could eat only a gluten free diet. I don't even know what a gluten free diet is, What does the diet concest of. What can you and can't you eat. I have cut out many things from my diet and I still have the problem. I wish I knew where I could start. One thing that I don't eat is milk products and wheat bread.

Any more advise anyone could give me would be very my apprecaited.

Thank you, Stephen.

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Stephen-

hey there... i would say that your continuing symptoms--which sound severe--could be pointing at potential gluten still in your diet. did you know gluten can be not only in food, but in medications, over the counter drugs and in your personal care products--shampoo. lotions etc? you will need to ck all of those--until you do, you can't be assured you are gluten-free. go here to see a helpful list of the safe and forbidden foods/ingredients on the gluten-free diet: https://www.celiac.com/st_main.html?p_catid=12 read them, print them off, carry them with you if need be when you are shopping etc. i would try not to eat out at restaurants either at this point, until you get the hang of the diet. if you are truly gluten-free, i think you should notice some improvement in your symptoms.

i would first figure out if you are gluten-free--and begin being so if you aren't. then if problems persist, you could look into other food intolerances/allergies and other disorders. being contaminated when you think you are gluten-free can be pretty common. do this work up front and you should notice at least some improvements initially. what you are taking to aleviate your symptoms may be making it worse. do let us know what you take so we can try and help.

what do you eat on a typical day? do you eat a lot of processed foods or fresh, whole foods? has anyone ever tried to educate you on this diet? you may want to read 'wheat free, worry free' by danna korn--excellent resource that covers most of the bases on being gluten-free and celiac. there are also some lists compiled of mainstream gluten-free foods.

there's some more questions for you :) try to be hopeful--i'm sure this board will help you figure some things out...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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If it isn't the problem, then I would also need to figure out how I could eat only a gluten free diet.  I don't even know what a gluten free diet is,  What does the diet concest of.  What can you and can't you eat.  I have cut out many things from my diet and I still have the problem.  I wish I knew where I could start.  One thing that I don't eat is milk products and wheat bread.

<{POST_SNAPBACK}>

I think you really need to concentrate on your diet and learn how to be 100% gluten-free. Did you do things like get a new toaster, check your shampoo, lotions, etc. Also you need to find out if any of your meds have gluten in them. This is a great place to learn everything you need to know. :)


Rachel

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One thing that I don't eat is milk products and wheat bread.

Stephen, gluten is not just in wheat, but also in rye and barley, and you can't have oats because they're contaminated with gluten here in North America (they're fine to have in Europe).

Also, what everybody else suggests is good. I know that the diarrhea stopped for me when I stopped getting gluten. You have to be like a detective when eliminating all sources of gluten, reading every label of everything you eat or put on your skin or take internally (like medicines).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I cannot figure out how lotions and shampoos could end up in your small intestines????  ;)

<{POST_SNAPBACK}>

Well...it can happen pretty easily. I can give you examples of how it happened to me. I put my lotion all over my face, hands and body. Now I have wheat germ oil all over me. If I sweat it can get into my mouth. If I cut up some fruit and eat it the fruit slices are all contaminated from the lotion on my hands. I also touch my face alot...then touch my food, or subconsiously touch my mouth with my fingers. I get peanut butter on my fingers and lick it off. I make hamburger patties after just showering and putting on lotion etc...now my hamburgers are contaminated. My make up had gluten in it...I would go to the gym and into the sauna...the sweat would pour off my face and of course get on my lips and into my mouth..now I have gluten from my make-up and my lotion and my hair products going into my mouth. Also when I cried...my contaminated tears ran into my mouth. All these things can happen without us even thinking about it.


Rachel

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I cannot figure out how lotions and shampoos could end up in your small intestines????  ;)

<{POST_SNAPBACK}>

Lotion on your hands can get ingested when you eat finger food. Shampoo running off your scalp onto your face could enter your mouth in small amounts.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Wow! That does make sense. Silly me, I was trying to imagine that somehow it would absorb through my skin! Is it pretty easy to identify? I've checked my lotion, and it doesn't appear to have gluten in it. Would it be listed as ingredients on the Forbidden ingredient list?

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Ok here is some more information.

I I think that the med's that I am taking are causing the problem more than anything else.  Does anyone think that this is possible.

<{POST_SNAPBACK}>

No, that is not possible from the extent of my knowledge. Medecation cannot cause Celiac. You have to have the gene, and a trigger. A trigger can be a viral infection, pregnancy (obviously not in your case), stress, and many other things that I'm sure others on this site can tell you. Medication will not make Celiac worse (I think) unless it has gluten in it which is very possible.

Don't worry, you'll get started on the gluten free diet. It is the only way to control your Celiac symptoms. Celiac won't just go away and won't be helped by medication. You'll get a lot of help from this web site and the people on this forum.

Good luck!

-Jackie


14 years old

Diagnosed with celiac disease in 1993

Totally gluten-free since 1993

"All there is in life is wheat...Oh, wheat! Lots of wheat! Fields of wheat! A tremendous amount of wheat! Yellow wheat. Red wheat. Wheat with feathers. Cream of wheat!" - Woody Allen, Love and Death

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Silly me, I was trying to imagine that somehow it would absorb through my skin!

Not silly at all, but very true. Here's an example on how fast things get absorbed into your skin:

Somebody wanted to test if garlic gets absorbed into your skin. He crushed a clove of garlic, put it on the floor and stood on it with his bare foot. Within FIVE MINUTES he had garlic breath!

When you put lotion on your skin, where do you think it goes? Right, it absorbs into your skin, and it gets into your bloodstream, too. Are your intestines supplied with blood? Certainly they are. So, if you have gluten in your lotion, it WILL get to your small intestine and damage it!

Also, if you have wheat germ (the most common thing in all natural shampoo) in your shampoo (lotion, soap), it can cause (or make worse) dermatitis herpetiformis (not sure spelling is right). My scalp has always been driving me crazy with itchiness, and I was constantly popping and scratching things off my head. When I changed my shampoo three weeks ago to a gluten free one, the itchiness got a lot better. It's not gone, because it will take a year or two for DH to go away after stopping gluten. But it's not nearly as bad.

So, that is in addition to the problems the previous posters mentioned, which are all valid, too.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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When you put lotion on your skin, where do you think it goes? Right, it absorbs into your skin, and it gets into your bloodstream, too. Are your intestines supplied with blood? Certainly they are. So, if you have gluten in your lotion, it WILL get to your small intestine and damage it!

<{POST_SNAPBACK}>

I thought gluten was actually too large to actually be absorbed into the skin?? :unsure:


Rachel

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I thought gluten was actually too large to actually be absorbed into the skin??  :unsure:

<{POST_SNAPBACK}>

Well, I haven't heard that. But if that is true, why would just touching my eyes after washing my hands with a soap containing gluten, cause my eyes to swell and itch for a day or two? Or why would washing my hair irritate my scalp so badly? Now I better look it up and find out if it really is too large to be absorbed.

But if it wouldn't be absorbed, why would it be in lotion? If everything else would be absorbed, except for the wheat germ, then you'd end up with a goopy layer of stuff on your skin. I don't think you do.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Okay, I did a little research, and this is what I found (emphasis mine).

Wheat germ Oil

Contains: protein, minerals, vitamins E, A & D

Uses: dry cracked skin, eczema, psoriasis, prematurely aged skin, stretch marks. Thick, sticky, some sources say anti-oxidant. Use a 10% dilution

NOTE: often recommended as addition to other oils to increase stability and shelf life. HOWEVER, Sylla Sheppard-Hanger states that "if anything it oxidizes more readily than others. The vitamin E content is low and does not prevent it from oxidizing...if it has been used as an anti-oxidant and worked it is purely because the original wheat germ oil contained synthetic antioxidants commonly added at the source of production."

Also, Wheat Germ Oil can be very dangerous for a person with a severe wheat or gluten allergy. I recently received the following in my email, from a member of the Canadian Celiac Association " Just wanted to mention that wheat germ oil would be harmful to those people who have a wheat allergy, or gluten sensitivity, like Celiac Disease (celiac disease), or the associated disease, Dermatitis Herpitiformus, (DH). Both Diseases are sensitive to the gluten in the wheat germ, and might inadvertently be absorbed through the skin.".

Info on oils


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Everything I've ever read regarding gluten says it CANT be absorbed through the skin. It has to be ingested to cause damage BUT some people may have skin reactions because they are simply sensitive to it... but its not actually being absorbed into the skin and causing intestinal damage. Thats my understanding anyways.


Rachel

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You would be surprised at how gluten could get into your system.

Your food needs to be prepared on a clean, sanitary area to avoid cross contamination. No double dipping from the peanut butter or butter containers, etc. because other people could be spreading onto products loaded with gluten. It is better to have your own container marked "Gluten Free".

If you have a pet, make sure that you wash your hands after you feed them or give them a treat.

There really is a lot to learn. This site as been so helpful to me :) . Keep asking questions. Everyone is so helpful and supportive.

It will get easier - knowledge is power!


Diagnosed with Celiac Disease April 2005

Diabetic

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Everything I've ever read regarding gluten says it CANT be absorbed through the skin. It has to be ingested to cause damage BUT some people may have skin reactions because they are simply sensitive to it... but its not actually being absorbed into the skin and causing intestinal damage. Thats my understanding anyways.

<{POST_SNAPBACK}>

Rachel, can't you see that it is the wheat germ OIL that's the problem here? And why wouldn't oil be absorbed into the skin? Anyway, I'm not sure if it gets to the intestine, but what does it matter? It's not just our intestines that are allergic to gluten, but ALL of us! It's just there where the damage is visible. You can't see the damage as easily elsewhere. But it's there.

If the gluten would only be damaging the intestines, we should only have gastrointestinal pain and problems. But you know as well as I do that, when glutened, we will have cognitive and mood problems (as it's affecting the brain), I will have terrible joint and muscle aches, nightsweats, nightmares, skin problems and many more. Meaning that obviously the gluten gets into the bloodstream and spreads throughout the body.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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