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

New To Forum & In A Bit Of Shock...questions!

kgoody813

Recommended Posts

kgoody813 Newbie
kgoody813
Posted

I'm 36 and at age 19, I was diagnosed simultaneously with two autoimmune disorders - Ulcerative Colitis and a blood-related one called ITP (Idiopathic Thrombocytopenic Purpura). My GI issues have been very well controlled by medications, which over time, have included Prednisone.

About a month ago, I started having reflux symptoms - sore throat, regurgitation, feeling badly after eating acidic foods. I had a regular check up with my GI doctor scheduled anyway, so he put me on Protonix, which did not help much after two weeks. He then suggested an endoscopy to, presumably, diagnose reflux and switch to something like Nexium.

The results of the stomach biopsies they did were thankfully benign, but the nurse just called and said that the biopsies "indicate possible Celiac Disease, and a follow up blood test is necessary." I am reeling as I know that this will be incredibly life changing (but also life saving) if the diagnosis is confirmed.

My question is - has anyone ever had the testing in reverse? Being that the endoscopy was first and then the blood work will confirm? Or are they just breaking it to me gently? - It would seem, from my initial reading, that the biopsy would be the gold standard of confirming the disease. Is there a case out there where Celiac was suspected from endoscopy, but then ruled out with blood work?

I appreciate your input in advance... I have two small children and modifying only my diet is, indeed, going to be life changing for EVERYONE.

Thank you!

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

From what I've learned, the biopsy would trump the blood test (however, I did have the blood test first and then the biopsy). And a number of people on this forum have had negative blood tests but positive biopsies. And some have been negative for both but still found eating gluten-free solved a lot of other problems for them. And some have just gone gluten-free on their own without either.

While the gluten-free diet is certainly life-changing, it is doable, and who knows...it may solve some of your other issues, too. Wishing you the best.

scouter99 Newbie
scouter99
Posted

Well, my doctor started me with the diet FIRST and feels that if that helps me there is no need to do the rest... so certainly there are a lot of ways to figure this out!

mushroom Proficient
mushroom
Posted

I believe I have read that there are other medical conditions that can cause the same kind of damage to the small intestine as celiac disease, and perhaps he is wanting to rule in celiac and rule out something else.

mommida Enthusiast
mommida
Posted

Did the pathology report include testing for eosinophils?

Did the doctor give you any pictures from the scope?

Skylark Collaborator
Skylark
Posted

I believe I have read that there are other medical conditions that can cause the same kind of damage to the small intestine as celiac disease, and perhaps he is wanting to rule in celiac and rule out something else.

Only Marsh 1, where they see lymphocytic infiltration but normal villous architecture. Marsh 2 or 3 is specific to celiac.

With Marsh 1, blood tests are a good idea, then try the diet.

kgoody813 Newbie
kgoody813
Posted
  • Author

I so appreciate all of your input.

To answer your questions, I do have pictures from the endoscopy and his commentary immediately afterwards that other than mild irritation in the esophagus, due to presumable silent reflux, everything looked normal, including the duodenum. I do not have any other biopsy results. I should've asked more questions when the nurse called me today, but I was half shocked and half in denial ~ I thought, this is so out there for me. I don't have ANY discomfort of any kind whatsoever.

What do Marsh 1, Marsh 2 and Marsh 3 refer to? I get my blood work done at an independent lab in the morning. They faxed the order there, so I'm not sure what's ordered. I do get CBCs w/Diff quite frequently, related to my blood disorder and the eosinophils are normal.

What numbers will be elevated and will confirm Celiac?

Thanks again. Please tell me all you know about the diagnostic process...

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

What do Marsh 1, Marsh 2 and Marsh 3 refer to?

The Marsh scale measures the degree of damage to the villi. It ranges from 1 to 4 (well, zero means no damage). Marsh 4 describes total destruction of the villi--that is where I was in July of 2000.

SaraKat Contributor
SaraKat
Posted

I had blood test first (levels were very high) and then endoscopy to confirm.

mommida Enthusiast
mommida
Posted

To be clear eosinophils have nothing to do with Celiac.

lorid888 Newbie
lorid888
Posted

I'm 36 and at age 19, I was diagnosed simultaneously with two autoimmune disorders - Ulcerative Colitis and a blood-related one called ITP (Idiopathic Thrombocytopenic Purpura). My GI issues have been very well controlled by medications, which over time, have included Prednisone.

About a month ago, I started having reflux symptoms - sore throat, regurgitation, feeling badly after eating acidic foods. I had a regular check up with my GI doctor scheduled anyway, so he put me on Protonix, which did not help much after two weeks. He then suggested an endoscopy to, presumably, diagnose reflux and switch to something like Nexium.

The results of the stomach biopsies they did were thankfully benign, but the nurse just called and said that the biopsies "indicate possible Celiac Disease, and a follow up blood test is necessary." I am reeling as I know that this will be incredibly life changing (but also life saving) if the diagnosis is confirmed.

My question is - has anyone ever had the testing in reverse? Being that the endoscopy was first and then the blood work will confirm? Or are they just breaking it to me gently? - It would seem, from my initial reading, that the biopsy would be the gold standard of confirming the disease. Is there a case out there where Celiac was suspected from endoscopy, but then ruled out with blood work?

I appreciate your input in advance... I have two small children and modifying only my diet is, indeed, going to be life changing for EVERYONE.

Thank you!

I just had the same thing happen. I had 3 biopsies that tested positive, but they wanted to do a blood test to confim. It seems to me, the biopsy would be proof positive. Wondering myself...

Skylark Collaborator
Skylark
Posted

I just had the same thing happen. I had 3 biopsies that tested positive, but they wanted to do a blood test to confim. It seems to me, the biopsy would be proof positive. Wondering myself...

Damage on biopsy and a positive response to the diet is plenty of proof. They want to rule out other problems but you are very likely celiac.

Archived

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

Go to topic listing

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

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748
    Aanhmcbride
    Newest Member
    Aanhmcbride
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.