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I Don't Know Where To Start!


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7 replies to this topic

#1 JenniferR

 
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Posted 27 January 2013 - 09:04 PM

My husband has had stomach problems since he was a child. When he was six they ran several tests on him and they were indeterminate. They left him with “you might have Crohn’s disease.” There wasn’t much done for him after that. He was told to avoid dairy and alcohol and that there was nothing more they could do for him.
Well, he did this for his entire life, but still suffered from crippling stomach pain, diarrhea and a general feeling of blah . Once he entered his late twenties/early thirties his pain and diarrhea became so severe that we decided to take him in to see a gastroenterologist once again. Over the last few months she has ran several tests on him. Taken biopsies of his stomach and intestines and given him CT scans. His stomach is so full of ulcers that she said she couldn’t believe he was walking around like this. The biopsies they did were for serious issues such as cancer and were all negative. The CT came back “normal” and she told him that it wasn’t Crohn’s and that she was going to refer him to an allergy specialist. In the mean time we have avoided gluten and it has seemed to really help. We are still not sure what the problem is but I want to make sure that it doesn’t get any worse. I don’t know what to feed him that will help his body heal the ulcers in his stomach and I am afraid to test foods like dairy that we have avoided previously. Any advice would be greatly appreciated as I am afraid for my husband’s health and he has had enough doctor tests and visits to last him a lifetime.
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#2 shadowicewolf

 
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Posted 27 January 2013 - 11:09 PM

Ulcers, in some causes, are caused by a certain type of bacteria (there is actually a document case where a scientist took a vile of said bacteria, downed it, and got an ulcer from it). What was he given to treat them with?

He needs to stay on gluten for test results to come out accurately.

Here is more on the bacteria i was talking about http://en.wikipedia....cobacter_pylori

Edited by shadowicewolf, 27 January 2013 - 11:11 PM.

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#3 mushroom

 
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Posted 28 January 2013 - 12:31 AM

Hello and welcome to the boards.

I am assuming with all his testing that they ran a celiac panel on him before he stopped eating gluten, and that one of the biopsies was for celiac along the way.

Those ulcers sound like they must be really painful, and again I am assuming they are not h. pylori.

Until you can get to the allergist I would suggest the blandest of diets; things like mashed potatoes, bananas, applesauce, canned fruits, white fish, spinach, swiss chard, squash, scrambled eggs, fruity herbal teas, soups made from bone broth. See how he copes with something like that.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 JenniferR

 
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Posted 28 January 2013 - 09:55 AM

Hello and welcome to the boards.

I am assuming with all his testing that they ran a celiac panel on him before he stopped eating gluten, and that one of the biopsies was for celiac along the way.

Those ulcers sound like they must be really painful, and again I am assuming they are not h. pylori.

Until you can get to the allergist I would suggest the blandest of diets; things like mashed potatoes, bananas, applesauce, canned fruits, white fish, spinach, swiss chard, squash, scrambled eggs, fruity herbal teas, soups made from bone broth. See how he copes with something like that.

Thank you for the food ideas. We have an appointment with the doc to hear the results of the last round of testing. I will make sure and ask exactly what they tested for in the biopsies. I just want to make sure that we are feeding him foods that won't cause more damage in the mean time. Thank you again! I will continue to post and read this forum as we get more information. So far it has been really helpful.
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#5 JenniferR

 
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Posted 28 January 2013 - 09:57 AM

Ulcers, in some causes, are caused by a certain type of bacteria (there is actually a document case where a scientist took a vile of said bacteria, downed it, and got an ulcer from it). What was he given to treat them with?

He needs to stay on gluten for test results to come out accurately.

Here is more on the bacteria i was talking about http://en.wikipedia....cobacter_pylori

He hasn't been given anything to treat them with as of yet. They have no idea what is wrong with him. We have another appointment at the end of the month and I plan on asking her how to heal them.
Thank you for the information on bacteria. I will make sure and discuss it with the doctor.
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#6 JenniferR

 
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Posted 01 February 2013 - 10:06 AM

All of my husbands tests came back negative. It is not H. Pylori, it is not Celiac. It is not Crohn's or Colitis or cancer. The doctor also said that he didn't appear to have Ulcer Disease. She was baffled. So we are back to square one. She said that she had no explaination for his stomach ulcers. His toxin screening was clean. The only thing that we know is that going gluten free seems to have really helped him. Even though the doctor said that his villi are normal. She recommended some over the counter drugs to help heal the ulcers. Has this happened to anyone else? We are staying gluten free for the time being. But it sucks not knowing anything.
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#7 mushroom

 
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Posted 01 February 2013 - 10:26 AM

Sometimes we have to be content not having a diagnosis, but knowing that we are getting better anyway by following the same procedure as if we did have the diagnosis. It is not the fault of you or your husband that they don't have a test for what he's got. In time they probably willl. With non-celiac gluten intolerance you get all the symptoms and auffering of celiac (except, apparently, damage to organs) but no diagnosis - well, they actually now have come up with NCGI to lend it some legitimacy :) If it helps at all, for every person diagnosed with celiac disease there are six gluten intolerants who don't get the diagnosis.

I hope the OTC meds help with his ulcers.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 GFinDC

 
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Posted 01 February 2013 - 02:00 PM

HI Jennifer,

I know the doc said he doesn't have H.Pylori, but since he has ulcers he is probably susceptible to getting H.Pylori. One estimate I saw said that about 40 to 50% of people have it. A couple of non-prescription treatments/preventatives would be a good idea IMHO. Mastic gum is one and DGL licorice is another. They are both fairly inexpensive options. Of the two, DGL licorice seems to work best for me. I've had ulcers several times and the DGL clears them up.

L Glutamine is supposed to help with healing the gut. Pepto Bismol is a cheap way to sooth the innards also.

If it is an allergy it means he has an IgE cell type immune reaction. They can test those at an allergist. Celiac is an IgG or IgA type immune reaction. Which is a big no matter really, except that IgE reactions can be treated with anti-histamines. So that is something to try. Think hay-fever meds. The best treatment is avoidance though.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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