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

What Should My Next Step Be ?


ChrisH

Recommended Posts

ChrisH Newbie

Hope it's Ok to ramble a bit, but I'm sitting up at 4 in the morning, wishing this abdomonal pain would go away :-(

To cut a long story short, I'm not quite sure what I've got, and I need some advice on what to ask the Doctor to do next.

Aged 51, Male, I have had an intolerance for eggs for some time, but also been diagnosed with IBS many years ago.

Motions have always been solid and heavy until recently when they have been freer and lighter.

I have been suffering from very bloated abdomen, excessive wind and general abdominal discomfort for years.

A couple of months ago, I had several days in a row where the pain was such that I got no sleep at all..

It got so bad that one morning I rang the emergency healthcare service and they advised a visit to the Emergency Hospital.

They took a look and did a simple blood test which showed a high ESR.

I decided to try and get to the bottom of the problem and saw my doctor..

I was sent for a Gastroscopy, and assumed they would take a biopsy to what was going on.

However, they discovered a Hiatus Hernia and stopped at that point without taking any biopsies.

When I returned to the Doc, she presribed Lansoprazole to help with Acid Reflux due to the hernia.

Unsurprisingly, that has made no difference at all, the pain is generally lower than the position of the hernia, and happens several hours afer eating.

several days I ate very little, some cheese, nuts and potato, and I was fine..

a couple of days I ate normal foods, but only light meals and the symptoms came back with a vengeance!

I have a suspicion that it is at least Gluten intolerance if not Celiac, just from a general feeling about what I have eaten when the symptoms occur,

I am due to go back to the doc in a couple of weeks and need advice on what I should ask for..

should I experiment to see if it is Gluten that is causing the problem ? How strict do I need to be..

Is it worth me buying a test .. which one should I go for, a general food intolerance test, or something more specific.

Chris


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Hi and welcome,

Since you mentioned problems with eggs, you may want to have some food tests and allergy tests just to rule food allergies out.

Next I would request Celiac blood work and biopsy from the Dr. Do not go Gluten free if you plan on being tested for Celiacs. The results will be skewed if you are gluten-free at the time of the tests. As a fun perk to the disease, once you go gluten-free, you're reactions to gluten will be worse! So it is not fun to be told to start eating gluten again for a biopsy.

If you are going to buy a test, get the gene test for Celiacs too. The tests from Entero lab do not require you to be gluten-free at the time of tests.

When you go on the gluten-free diet, you need to be 100% gluten-free always. No cheating, no accidents (best as you can to avoid them). You should see improvement within a few weeks and see a big difference within a few months, if you have Celiacs. A lot of us can't digest dairy easily when first diagnoised, so look into going gluten-free/CF - at least to start.

It does sound like you are likely a Celiac. Hopefully you will get a diagnosis soon and start feeling better.

ChrisH Newbie
Hi and welcome,

Since you mentioned problems with eggs, you may want to have some food tests and allergy tests just to rule food allergies out.

Next I would request Celiac blood work and biopsy from the Dr. Do not go Gluten free if you plan on being tested for Celiacs. The results will be skewed if you are gluten-free at the time of the tests. As a fun perk to the disease, once you go gluten-free, you're reactions to gluten will be worse! So it is not fun to be told to start eating gluten again for a biopsy.

If you are going to buy a test, get the gene test for Celiacs too. The tests from Entero lab do not require you to be gluten-free at the time of tests.

When you go on the gluten-free diet, you need to be 100% gluten-free always. No cheating, no accidents (best as you can to avoid them). You should see improvement within a few weeks and see a big difference within a few months, if you have Celiacs. A lot of us can't digest dairy easily when first diagnoised, so look into going gluten-free/CF - at least to start.

It does sound like you are likely a Celiac. Hopefully you will get a diagnosis soon and start feeling better.

Thanks, its going to be hard putting up with the sleepless nights for a couple of weeks when I think theres a chance I can fix it :-( but I'll stay with a fairly normal diet, but probably less food, as that seems to help a little.

I'll order the tests in the morning, The Doc will likely want to do them also.. but at least thats one positive step..

and it also helps just having someone to talk to !

I'm going to go for a walk and see if that helps get my mind off it !

Cheers

Chris

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,893
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.