Jump to content
  • 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):

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. - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

    2. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

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

    • Total Members
      134,058
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...