Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Don't Know Where To Start!


JenniferR

Recommended Posts

JenniferR Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

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 Open Original Shared Link

mushroom Proficient

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.

JenniferR Newbie

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.

JenniferR Newbie

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 Open Original Shared Link

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.

JenniferR Newbie

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.

mushroom Proficient

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

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/

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

    2. - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,748
    • Most Online (within 30 mins)
      7,748

    NYC Sidewalk Repair
    Newest Member
    NYC Sidewalk Repair
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • olivia11
      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
    • Roses8721
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.