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Can't Keep Any Food Down..
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My 21 yr old daughter, recently diagnosed. (4 weeks ago) All but bed ridden for a year. Diagnosed with Fibromyalgia to Epilepsy. Ended up in the ER (again) 4 weeks ago, looking like she was on death's door. FINALLY! diagnosed through biopsy. Spent 5 days in the hospital. Home for 3 then back in ER, admitted for another 5 days. The GI dr was HORRIBLE and has given us NO info to go on. When she was admitted the second time with pain, vomiting & diahrea, he ordered a psych evaluation because "CELIACS DOESN'T CAUSE PAIN" UGGGGHHH!! The psych dr reported that her mind was fine, she was physically ill, and needed treatment. (the psych's MOTHER had been diagnosed two years earlier) Another 5 days in the hospital. We're into her second week at home and, despite all the gluten free food, eliminating eggs/dairy for 3 days now, she still vomits EVERYTHING she swallows. From gingerale and jello to gluten free pancakes. She vomits a few bites into the meal, or immediately after. We are at wits end. If someone could please offer any help, it would be greatly appreciated.

Thanks for the ideas and encouragement and believe me, THAT poor excuse for a doctor was history the moment we walked out the door. We have an appt with a new GI, unfortunately, not until 4/2. I just don't understand HOW she's going to get better without some kind of intervention. Her poor body. No villi, ulcer, lining of her stomach messed up. Thinking of the additional damage being done to her esophagus terrifies me. Call into the primary to call the GI & get her in asap. Thing is, when she was in the hospital, on IV fluid & meds, she was able by the 3/4th day to eat without vomiting.

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I am sorry that you and your daughter are going through such a difficult time.

Which ever doctor said that Celiac does not cause pain, needs a new profession. There are many,many here that can attest to that.

I am not sure that I can be of help, but have you checked your daughters meds to make sure that they are gluten free. In her fragile condition, the smallest amount of gluten can cause her pain and uncomfort. ANYTHING that she puts in her mouth or near her mouth should be clear of all gluten.

It may take sometime for your daughter to feel better. It took years for her to get to this point and it will take some diligence and time for her to recover.

I wish you the best.

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Sometimes a period of tube feeding with a special formula is needed to rest the bowel and allow it to heal. This can be done at home. Have you considered bringing in another physician who will address her symptoms in a more sympathetic way?

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Hello....

The positive thing is that you finally found the cause for all your daughters trouble so don't give up now. I understand you are feeling anger and frustration....Who woulndn't...So, I've been gluten free for 3 months and I still have nausea. It is either

1) because my villy is so damaged that can't work properly (yet)

2)or because of my other intolerances

3)or because of a serious damage in the intestine, which can be found with a colonoscopy and I am going to make that

If it is because of the damaged villy then I guess it's just a matter of time

For the intolernces now..Very often people with celiac have other food intolerances as a side effect. Me, I am intolerant in 40 foods. Maybe you should check it out.....Lactose and casein intolerance are the most popular but there can be an intolerance in anything else (potato, tomato, beef etc) and there is a pretty good chance that this is causing your daughters problem.

You should of course find yourseves a doctor you can trust (hard thing to find, believe me I know..) and ask them to exclude all other possibilities. For example a problem in her gall blader (usual if you are celiac) can also cause vomiting. Or ulcer. Of course I am not a doctor. I am just giving you some ideas because I have the same problem and I am going to have that colonoscopy to find out what is finally wong with me...

I hope she will start feeling better really soon...

She is lucky to have a caring mother. Be strong.

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The doctor does not know what he is talking about when he says "Celiac doesn't cause pain".

I suggest you locate your Celiac local support group and ask if they have any recommendations for GIs. I did this when I was looking for a GI to do a routine screening colonoscopy. Also, check with the Universities in the area that have medical schools. The ones I looked at in Southern CA had a webpage for each doctor which listed their interests.

I hope your daughter gets well soon.

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Sending you and your daughter strenth. Don't give up you WILL find the answers :P

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This sounds so painful and difficult. I am also thinking that IV support and a total rest of the system may be in order.

Then I would wonder about baby foods in tiny amounts. I'd avoid any gluten-free substitutes for now. Make your own baby foods, and maybe just vegetables like peas or carrots, if she can keep that down add a little meat. Keep the spices out too. Salt may be okay though.

I've read others on the forum who had to do baby food equivalent for even six months. That's not me personally, but hopefully you'll get more responses.

In terms of allergy, this is a possibility too. I once met a young woman at my allergist's that had previously been hospitalized with vomiting and diarrhea that could not be stopped. Doctors could find nothing wrong; they finally called my allergist who is quite respected in the community. He found food allergies and was able to treat her using neutralizing drops (an approach which is not that common). She lives a normal life now, with several strict avoidances, but using neutralizing drops to help her be able to eat most other things.

She was reading an article in Prevention magazine about the neutralizing drop approach being fake and a placebo. She laughed out loud, and said, "if this is a placebo, keep it comin!"

Please keep us posted and give your daughter our well-wishes.

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Sometimes people have such severe allergies that they have to spend a period of time on special predigested hypoallergenic formula (such as neocate baby formula) to heal. This is a condition called Eosinophilic gastroenteritis. Its very painful and can develop in anybody with food allergies/intolerance.

http://www.apfed.org/egid.htm

They thought I had this before they decided I had celiac. My GI was sooo messed up.

I hope she can see a better doctor soon and get some answers.

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Someone in your daughters shape cannot handle ANY grains, no gluten-free pancakes, no crackers - nothing but meat, veggies & fruit & those should be easy to digest.

I suggest baked sweet potatoes, boiled organic chicken with some boiled carrots... some organic applesauce (found in the regular grocery) boiled eggs mashed up - if she does not have a problem with eggs.

You want to avoid for the time being:

Avoid All grains

dairy - all - no yogurt etc

soy

beans

peanuts

white potatoes

You will also want to supplement with vitamins & minerals in liquid form that can be absorbed right away - & or shots...

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    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
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