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HarryB

My Wife Has Recently Been Diagnosed With Celiac ...help!

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My wife has recently been diagnosed with Celiac. She has been on a completely gluten free diet for ten weeks. Her condition seems to be getting worse. She has constant stomach pain,only relieved temporarily with pain killers. Is this normal? Should she not have achieved some relief from her symptoms by now? She continues to loose weight and spends much of her day in bed using a hot water bottle on her stomach trying to get somr relief.

We are in Vancouver, Canada. Does anyone know of a specialist in our area.

The doctors tell us that they have done pretty well every test to eliminate any other problems and that is where they have left us. My wife is 51 years old. 5ft 7" tall and weighs 115 lbs. She can not afford to loose any more weight.

|Help! HarryB

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Are you absolutely sure she is gluten free? Is she on any medications? Many medications do contain gluten, and never ask the doctor if the med is gluten free, because he/she will not have a clue. Sometimes even the pharmacist doesn't know. You need to call the drug company directly. Could there be a cross contamination issue? I was getting cross contaminated by an old pan from the scratches in the pan!

Tell us what she is eating. Is she eating simple foods? Processed foods? Try simple foods, chicken breast and rice, baked potato--no processed foods. Stay away from the processed gluten free foods for now. Gluten free breads are so heavy, her tummy may just not be ready for any of that kind of thing yet. Stay simple for now. Maybe very light meals, 6 times a day, instead of 3 bigger meals. No raw veggies for now.

Let us know how she's doing. Feel free to email me--darlindeb25@aol.com include celiac forum in the subject line.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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And she may need to cut out DAIRY, at least for right now. She can reintroduce it later. But my understanding is the tips of the villi in her intestines are compromised and it is those tips that produce lactase, the enzyme that helps digest milk. Casein which is also in milk bothers a lot of celiacs. And some can never eat it again.

I agree to keep it simple: leans meats, steamed veggies, small amounts of fruit, rice, potoatoes, sweet potatoes are very nourishing and healing.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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And she may need to cut out DAIRY, at least for right now. She can reintroduce it later. But my understanding is the tips of the villi in her intestines are compromised and it is those tips that produce lactase, the enzyme that helps digest milk. Casein which is also in milk bothers a lot of celiacs. And some can never eat it again.

I agree to keep it simple: leans meats, steamed veggies, small amounts of fruit, rice, potoatoes, sweet potatoes are very nourishing and healing.

I agree, but i'd go further and cut out the four top allergens: gluten, dairy, soy, and corn. As a previous poster said, stick to homemade meats, soups, rice, potatoes, fruits, and cooked veggies.

Have they tested for H.pylori? It's a bacteria that causes ulcers and it can be easily treated.

I'd also recommend she take a good probiotic to help her intestinal flora to build up, and maybe also some digestive enzymes to help her with her digestion.

No food dyes, no MSG, nothing artificial. She probably has a leaky gut so everything she ingests is leaking into her blood stream and causing antibodies to go into action...this is why it's so important to stick to homemade and ORGANIC foods..especially organic meat due to the additives/hormones/gluten/casein/MSG added.

hope she feels better SOON :)


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

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My wife has recently been diagnosed with Celiac. She has been on a completely gluten free diet for ten weeks. Her condition seems to be getting worse. She has constant stomach pain,only relieved temporarily with pain killers. Is this normal? Should she not have achieved some relief from her symptoms by now? She continues to loose weight and spends much of her day in bed using a hot water bottle on her stomach trying to get somr relief.

We are in Vancouver, Canada. Does anyone know of a specialist in our area.

The doctors tell us that they have done pretty well every test to eliminate any other problems and that is where they have left us. My wife is 51 years old. 5ft 7" tall and weighs 115 lbs. She can not afford to loose any more weight.

|Help! HarryB

Also, as much as I don't like medications, my mother had a digestive crisis a couple years before she passed away, and was down to 86 pounds. What finally helped stop her diarrhea was taking pepto bismol 5 times a day (per mayo clinic recommendation). Now, mayo clinic also never tested her for celiac and i'm sure she had it, so they are not the best doctors in my opinion. But perhaps while your wife is changing her diet, for a week or so it might give some relief. ( I think it has artificial dyes in it which I don't like either).

Besides doing all the dietary changes we mentioned, if she seems like she's getting dehydrated or vitamin deficient, I would INSIST on an IV drip to replenish her. I'm so angry with all I know now that no one did anything for my mom, and she just wasted away all those months. She finally started gaining the weight back, but unfortunately later got cancer.

I would look for a holistic MD doctor who will treat her underlying problems. She really needs to have someone who will work with her to build up her immune system now. Maybe you can also find a doctor who does vitamin C intravenous infusions to build up her immune system. She needs to be taking lots of vitamin C right now, i'd say 3-5000mg per day--she could drink it as a powder with juice 4 times a day.


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

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Thank you for your suggestions. I b elieve she has cut out pretttywell everything that you all mention. She has cut out dairy, soy, corn, meat, etc. She has been down to eating canned organic baby food(pears) She only eats a small amount of chicken, when she can eat without being sick. She has now started trying Ensure on the advice of a doctor. Other thatn that she just seems to be going down hill steadily. She has stomach pain pretty well all day with the pain easing up in the evening. This seems to be the only time that she can eat and keep it down.

We have done a lot of research on gluten in various forms and I truly believe she is gluten free and has been for several weeks. She goes for iron shots once a week but takes fish oil and B Vitamins.

I agree that she needs to find a specialist whether one in orthodox medicine or otherwise. We live in Vancouver Canada.

Any suggestions.

HarryB

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I am sorry you are going through this. In the last year I suffered severe abdominal pain, I was rushed to the Emegency room many times, The IV's helped the misdiagnosis did not. Ask them to check her Pancreatic Enzymes, I wound up getting Pancreatitis ( Extreamly PAINFUL) . I lived with my hot water bottle. Finally they diagnosed me with Celiac upon my request. I was waisting away, I was hospitalized, when I got out I pushed myself to eat I had a MANTRA MUST EAT I made Potato Soup cook the Potatos to a Mush then add green beans if she likes THYME that is a refreshing herb.

If her feet are cold she is having circulation problems ( I just kept the other water bottle at my feet. in the hospital they said YOU MUST WALK OR YOU WILL GET A BLOOD CLOT .

I do hope that her pain killers are not NSAID ( IBprofin, Aleve etc bad for the intestine at this point)

Count how many times she urinates and deficates keep a calander near the toilet.

Have them check her liver Enzymes,

The baby food might be contaminated with oats? There is one brand from Whole foods (365) that is gluten-free ( Gluten Free). Cook All fruits. I ate plenty of rice with beef stew.

You might have to stay home with her . ( Or a family member)

I would like to know if they ruled out Crohn's that is a sneaky disease.

All the best


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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Some fish oil contains shellfish which makes me very sick, I stay away from fish oil!!! Beechnut baby foods have a gluten free listing too!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Look into a nutritional supplement called Benecalorie. It can be ordered online, and may help her.

Please keep us posted on how she is doing.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Thank you for your suggestions. I b elieve she has cut out pretttywell everything that you all mention. She has cut out dairy, soy, corn, meat, etc. She has been down to eating canned organic baby food(pears) She only eats a small amount of chicken, when she can eat without being sick. She has now started trying Ensure on the advice of a doctor. Other thatn that she just seems to be going down hill steadily. She has stomach pain pretty well all day with the pain easing up in the evening. This seems to be the only time that she can eat and keep it down.

We have done a lot of research on gluten in various forms and I truly believe she is gluten free and has been for several weeks. She goes for iron shots once a week but takes fish oil and B Vitamins.

I agree that she needs to find a specialist whether one in orthodox medicine or otherwise. We live in Vancouver Canada.

Any suggestions.

HarryB

She could be suffering from withdrawal symptoms. Here's a link and an excerpt about this--they don't mention stomach pain as a symptom however, but that doesn't mean it isn't related.

http://www.corepsychblog.com/2007/08/celiac-notes-op.html

Celiac Notes: Opiate Withdrawal from Gluten and Casein?

Opiate withdrawal from discontinuing gluten and casein? Cautionary note: sounds absurd until you see it.

You might want to warn gluten sensitive, celiac and casein sensitive patients about this odd and painful clinical phenomenon: Withdrawal after stopping wheat or milk products can be painful, exhausting, and depressing, with weakness, anger, and brain fog.

_______________________

As I said before, i'd get that test for H.pylori. I'd also go back to the docs and insist on further testing--there could be something else going on in her stomach/intestines. What kind of symptoms was she having before she started the gluten-free diet? Are you 100% sure that her vitamins and fish oil are gluten-free and CF? Is she throwing up as well as having diarrhea? Have you tried the pepto bismol? Some people on this forum have talked about testing for parasites, something regular docs don't do either...that might be something to ask others on here about.

I woudln't personally recommedn Ensure at all...it's full of sugars, isolated soy or whey(dairy) protien (MSG) and other things she does NOT need). But the idea is a good one...to make her healthy shakes that she can drink with a straw--but they need to be homemade or she'll be getting a bunch of junk. Maybe you could try some rice protein powder (make sure it's Gluten-free Casein-free etc) mixed with a mild fruit that she can tolerate, I like berries, and 1/2 banana, you can even mix up the fish oil and vitamin C powder in there...blend it up and you've got some good nutrition there. THe rice powder i use is made by METAGENICS...i'ts approved as a "medical food" by the FDA--this is not an easy thing to get. It's free of allergens and gives 15mg protein, plus some carbs and good fats. You can probably order it online. If not, you can pick up the local Rice powder at a health food store, but I recently did that (cheaper) and it didn't taste nearly as good, and didnt' have the carbs and fats either so not as much of a meal replacement.

You must be worried sick...but have faith and try to keep positive. And insist on good healthcare, don't let them ignore you! Let us know how she's doing.


Liz

Positive enterolab results 11/07:

-antigliadin IgA: 56 (normal <10)

-antitissue tTG IgA: 39 (normal <10)

-anti-casein IgA: 34 (normal <10)

-HLA-DQ: 2,1 (2,6)

Positive blood test IgA and IgG 12/07

Gluten-free Casein-free since 12/07

mostly soy free since 12/07

Diagnosed with adrenal fatigue 08/07

Diagnosed hypothyroid 01/08

Still have mercury fillings, high mercury and lead

Multiple chemical sensitivities

9 year old daughter positive enterolab test for gluten, casein, soy and egg with HLA-DQ 3,1 (7,6)--mostly exhibits behavioral reactions to foods including food dyes, MSG, aspartame

Mother passed away 3 years ago of adenocarcinoma of unknown primary. Two years prior had diarrhea causing her to weigh 86 pounds...Mayo clinic told her to take pepto bismol. NO test for celiac, lifelong hx of ulcers, osteoporosis. I now know she had the celiac gene (my dad has DQ1) and was probably undiagnosed her whole life.

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Go to Other Food Intolerance and Leaky Gut Issues...then...OMG I might Be on to something. Over 600 thousand have read it. It's about being allergic to corn.


Come unto me, all ye that labour and are heavy laden and I will give you rest. Matthew 11:28

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