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Are My Symptoms Celiac Or Ibs?


Thomasmcfall

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Thomasmcfall Newbie

Hi all, firstly this site could be very helpful for me so its great!!

I have the following symptoms and my GP has said I am suffering from IBS,

I have been tested (blood) and have seen a Specialist (Gastro.....ologist) and they have both said that I have IBS, I have had no Endoscopy, or Ultra-sound scan or biopsy???...

My symptoms then... Very sore tummy pain, bloated/cramps...severe wind (no Vomiting)But often feel sick/nauseous...

Have some dry skin on my head, chest (although I do suffer from exzema).. I would real appreciate some help...friends and colleagues have suggested gluten in my diet, or perhaps dairy produce???

I just get so depressed and It really does severely affect my life.

Hey thanks everyone!!

Thomas


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pewpewlasers Rookie

I would ask your doctor about an endoscopy. Have they told you why they haven't done one yet to rule out celiac?

Fiddle-Faddle Community Regular

While an endoscopy can confirm celiac, it really can't rule it out. There have been plenty of people on this board whose initial biopsies were negative, but later biopsies showed celiac.

There are several possible reasons for this.

The first biopsy might have been taken before there was significant damage to the villi.

The first biopsy might have been taken when the patient was already gluten-free (an automatic negative biopsy, but most doctors don't seem to understand this).

Some patients with celiac never develop villi damage, or only develop it much later (such as those with Dermatitis Herpetiformis, which is an automatic diagnosis of celiac even without villi damage).

Even when there IS villi damage, it is often patchy, and not easily visible. A couple of tiny (1/4 inch or smaller) samples taken from 22 FEET of intestines can be a hit-or-miss affair in this situation.

The current idea that the "gold standard" diagnosis of celiac is based on the technology of 50 years ago, when this "gold standard" first came into use. This was before the sensitive and high-tech blood tests of today were available.

Many people question why the biopsy is still considered the gold standard of diagnosis. Indeed, many doctors do diagnose celiac based on blood work alone, though most still rely on the biopsy.

nu-to-no-glu Apprentice

If this is any help...my dr believes that "ibs" is merely a symptom. I was diagnosed with ibs probably about 6 times, by 6 different drs and having taken about every ibs medication available (with no relief) I have to say I believe it! I've been gluten free only a month, and the results are astounding! I recommend just trying it, as a search for an educated dr can be frustrating.also,search for a thread called "recommend a dr in your state" and you might find a knowledgable dr near you. I think its a good place to start, especially if you think you notice a connection. Good luck!

  • 2 weeks later...
missybean Apprentice
Hi all, firstly this site could be very helpful for me so its great!!

I have the following symptoms and my GP has said I am suffering from IBS,

I have been tested (blood) and have seen a Specialist (Gastro.....ologist) and they have both said that I have IBS, I have had no Endoscopy, or Ultra-sound scan or biopsy???...

My symptoms then... Very sore tummy pain, bloated/cramps...severe wind (no Vomiting)But often feel sick/nauseous...

Have some dry skin on my head, chest (although I do suffer from exzema).. I would real appreciate some help...friends and colleagues have suggested gluten in my diet, or perhaps dairy produce???

I just get so depressed and It really does severely affect my life.

Hey thanks everyone!!

Thomas

I have been diagnosed as having IBS as well and I have seen so many doctors from allgergist,dermatologist,rheumatologists,gastro's, to GP's. I never had any positive blood work for celiac but I basically figured out on my own I had a problem with grains. Didn't suspect gluten until I started getting these awful hive like rashes on my knees and my primary said that it looked like DH and said the only way to get better is gluten free diet....I did it and with-in a week all my IBS symptoms and joint pain went away and the itch rash started to improve. Hummm. I agree with a lot of other people.... diagnoses really shouldn't just be based off of positive blood work or boipsies because many of us get tested for years and still no positive tests results. Go gluten free for a couple of months. Some people notice a difference right away and others it takes months if not a year or two for all the symptoms to go away. Don't give up and trust your gut no matter what some stupid test says. I have been on this journey for only 2 years of trying to figure out whats wrong and I'm just finding stuff out. Do a food journal thats what really helps and you could also have other food sensitivies as well as gluten issues..... most of us do. I agree with the theory that IBS is really a symptom of gluten sensitivity or other food allergies. I makes sence to me. To me IBS is just a name for a bunch of symptoms that they can't figure out or get any positive blood work on.

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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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