Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Don't Know Where To Start!
0

8 posts in this topic

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.

1

Share this post


Link to post
Share on other sites


Ads by Google:

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.org/wiki/Helicobacter_pylori

Edited by shadowicewolf
1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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/

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined