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

Please Help!


pathpawb

Recommended Posts

pathpawb Newbie

Hi Everyone,

I am new to this site and I have been pretty sick and I don't know what to do. For the past 2 weeks I have had severe abdominal pain and diarrhea and I have been unable to eat ANYTHING because when I eat, the pain gets much worse. I have celiac disease and I have already lost 10 pounds with this. I also have bloating and I am very tired. I talked to my GI doc today and he said you don't have pain with celiac disease!! He said I needed to see a gyn doctor. So I called my gyn doc and he said to cal after my next period ended to see if I had a cyst. SO I called my GI doctor's office back and they said they will see me tomorrow. I feel like no one is listening to me!! This pain is real and I feel really sick!! DOes anyone know what I can do to help this situation? WHat can I tell my doctor to make him listen to me? Has anyone else had this type of problem? Please help!! Thank you!


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



Celiac.com Sponsor (A8-M):



MELINE Enthusiast

Hi there...

I am sorry that you have all these symptoms. There is an idea why you keep having them....maybe you have some other intolerances...Most of us can't eat casein or lactose. Have you checked that? Or is there any chance that you gluten yourself by accident?

To make you feel better, I have the same problem with you and I am going to have a colonoscopy and a biopsy. Maybe you should find yourself a doctor you can trust....Please don't give up....

Take care

dbmamaz Explorer

Ok, celiac hurts! Are you gluten-free? You didnt specify if you are or not. Did anything change 2 weeks ago when this started? Also, were you checked for parasites?

I didnt have such bad symptoms, others might have ideas for what helps w the D and cramping.

Keep working on those doctors, and if they act like its all in your head - find another doctor! Hope you feel better soon

Ursa Major Collaborator

What nonsense that you don't have pain with celiac disease! Before I figured out that my problem was gluten, I went to the ER with such intense pain that I thought I was dying! I had another one during that summer (2005) but didn't bother with the ER that time, because they were no help the first time.

I've never had that horrible pain again after I started the gluten-free diet.

You didn't say if you are on the gluten-free diet. Also, dairy or soy could be causing those symptoms as well.

YoloGx Rookie
Hi Everyone,

I am new to this site and I have been pretty sick and I don't know what to do. For the past 2 weeks I have had severe abdominal pain and diarrhea and I have been unable to eat ANYTHING because when I eat, the pain gets much worse. I have celiac disease and I have already lost 10 pounds with this. I also have bloating and I am very tired. I talked to my GI doc today and he said you don't have pain with celiac disease!! He said I needed to see a gyn doctor. So I called my gyn doc and he said to cal after my next period ended to see if I had a cyst. SO I called my GI doctor's office back and they said they will see me tomorrow. I feel like no one is listening to me!! This pain is real and I feel really sick!! DOes anyone know what I can do to help this situation? WHat can I tell my doctor to make him listen to me? Has anyone else had this type of problem? Please help!! Thank you!

I agree, you may be eating other things you are intolerant to.

I suggest you try going on a kind of fast, just eating some cooked vegetables you don't normally eat and maybe also rely on eating cooked slippery elm. Or, alternatively, just eat the slippery elm if nothing else agrees. It really is very soothing and healing.

The formula for slippery elm is as follows: 1 tablespoon slippery elm to one cup water. Put slippery elm in a very small amount of cold water and mix well so its no longer lumpy (it tends to resist water at first). Then add the rest of the water. Cook 10 to 15 minutes on a slow boil, stirring every while. If cinnamon is OK for you you could add that and maybe a little stevia to taste. It is very nutritive though a little mucous forming (the cinnamon helps counteract this).

The other thing that is soothing to the gut which is a lot quicker is marshmallow root. It is not mucous forming by the way. Take a teaspoon and mix it with again a very small amount of cold water. Then, once mixed, add water up to a cup, drink and then chase with some more water. This will help soothe your gut very quickly. Both herbs helps soothe and heal the villi--which really is where it is at.

You also could try digestive enzymes. It may make a huge difference in your ability to eat. Pancreatin might be to the point as may also be bromelain/papain. It is unlikey these will create any allergenic problems unless you are allergic to pineapple or papaya. I personally don't do well eating raw pineapple though cooked is OK. However these enzymes don't create a problem for me.

On that note, be careful of raw fruits or fruits in general. Some people are allergic to some or all of them. As far as vegetables, I am allergic to carrots and others often have tomato, potato and pepper allergies. I am allergic to nuts as are many celiacs. Sprouting seeds helps make them more digestible.

Anything is suspect so go about figuring out what you can or can't eat slowly, adding one item at a time every couple of days and keep book recording your reactions or not, as well as your pulse rate. A rapid pulse sometimes and a slwo pulse other times not associated with shock or activity usually indicates a sensitivity.

There are more things you can do, however this would be a good start. Nevertheless taking B vitamins might be really important since its possible you are deficient in some of them. I don't make or utilize vitamin B-1 very easily for instance which makes digesting proteins and carbohydrates difficult. Two years go I started taking co-enzyme B complex from Country Life and it has made a huge difference for the positive for me.

If you are getting all these blood panels done, have them check out your B's--thoroughly. It often is a real problem for people with celiac, and it thus compounds the problem.

You could also be deficient in other vitamins and minerals as well. Actually it is likely, so if you are having it done get it done!

Good luck!

itchygirl Newbie

Celiac disease also puts you at high risk for pancreatits, which causes severe pain whenever you eat. Has your doctor done any bloodwork, esp amylase and lipase?

If he needs a study to jog his tiny doctor brain, here is one:

Open Original Shared Link

and here are the symptoms of pancreatitis

Open Original Shared Link

flourgirl Apprentice

You're not alone! Before my diagnosis I went months getting sicker and sicker. I still have a lot of stomach pain and trouble. It hurts if I don't eat, hurts if I do, and it doesn't seem to matter what it is that I eat. My weight dropped from 130 to 105. Since going gluten free I've gained some back, holding steady at 114, I eat because I have to, not because I want to. I had such bloating and pain for so long, Ihad many tests for nothing...but at least eliminated some things. Of course there can be pain...and not just the stomache! Stick to your guns, take charge of your treatment with knowledge and courage. Some people take longer to heal than others, so be patient, too. Good luck and get better soon.


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



Celiac.com Sponsor (A8-M):



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. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

    2. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    4. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

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

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748

    kk007
    Newest Member
    kk007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      I agree.  If someone has Barrett's Esophagus, at least here in the UK, as I understand it under normal circumstances a PPI needs to be taken long term (or similar medication).  I have two friends with this.  The PPI it does have side effects but they still have to take it.  
    • knitty kitty
      Do talk to your doctor about making changes to your medication.    I'm not a medical doctor.   I'm a microbiologist.  I studied nutrition before switching to microbiology because I was curious what vitamins were doing inside the body. I would hate to give advice that jeopardizes your health, so do discuss things with your doctor.   
    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
×
×
  • 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.