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

Frustration of no clear diagnosis after months

Sterling

Recommended Posts

Sterling Rookie
Sterling
Posted

I am now six months into test. Here is the position so far:

Mild anaemia otherwise asymptomatic / Ttg IgA positive 27.5 U/ml (range 0.6 to 6.9), positive again on recent re-test / Endomysial antibody IgA level: not detected / Genetic tests: positive / Endoscopy with six biopsies all negative / Colonoscopy: no concerns. Gastroenterologist  suggested results not clear line but most probably non-coeliac. 

I met a specialist coeliac consultant today who has called for all blood tests again and indicates that a further endoscopy may be required looking deeper into the intestine. This consultant stated that I am definitely on the "coeliac spectrum".   

Please, does this fit anyone else's pattern?

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

Celiac.com Sponsor (A8-M):


Celiac Nutritionist Newbie
Celiac Nutritionist
Posted

Do you have a copy of your pathology biopsy report?        

Yes?   What exactly does it state?     (ie: does it have any atrophy or duodenitis stated on the report?)

No? - Ask your doctor for a copy.

Is the pathologist unfamiliar with Celiac Disease? (this could potentially effect the results).

Sterling Rookie
Sterling
Posted
  • Author
On 09/01/2016 at 6:23 AM, Celiac Nutritionist said:

Do you have a copy of your pathology biopsy report?        

Yes?   What exactly does it state?     (ie: does it have any atrophy or duodenitis stated on the report?)

No? - Ask your doctor for a copy.

Is the pathologist unfamiliar with Celiac Disease? (this could potentially effect the results).

Thank you, Celiac Nutritionist, for taking you time to respond to my posting.

The gastroscopy indicates duodenum normal. Two biopsies taken at the "bulb" and four biopsies taken at the "second part". I do not have the pathology report. But I was told that the biopsies were normal.

The gastrologist has passed me over to a coeliac consultant. The immediate view is that I am unquestionably on the "coceliac spectrum". Now all blood tests have been re-ordered and a deeper endoscopy may be required.

So even after 12 months of investigation, I am being instructed to continue of consume gluten until investigations are complete. At some point I may just decide to go on the coeliac diet.

Kind regards, Sterling

 

  

 

  

Celiac Nutritionist Newbie
Celiac Nutritionist
Posted

Hi, Sterling.

 

If it's possible - try and find out through your reports if there is ANY percentage of villi atrophy.    Glad you are seeing a gluten consultant, is it at one of the celiac centres?

Sterling Rookie
Sterling
Posted
  • Author
On 12/01/2016 at 6:04 AM, Celiac Nutritionist said:

nd find out through your reports if there is ANY percentage of villi atrophy.    Glad you are seeing a glute

I have recently been treated privately but my case has been referred to specialists within the English National Health Service (NHS). It is very difficult to get detailed results sheets when under NHS care. When you pay you can get what you ask for.

However, today they confirm a diagnosis of Coeliac Disease notwithstanding normal biopsies. However, they want me to follow a harsher gluten diet for 6 to 8 weeks and then have an enteroscopy investigation with jejunal biopsies. They  expect that they would confirm coeliac disease with the biopsies deeper into the  intestine.

They surprisingly seem to be very intent upon finding positive biopsies.

 

 

 

squirmingitch Veteran
squirmingitch
Posted

So you're saying they say you do have celiac disease based on the positive blood work twice now. I understand they say the biopsies are negative. And you're saying they want you to eat even greater quantities of gluten for 6-8 weeks & then repeat the endoscopy with biopsies but they want to go deeper in the intestine.

Assuming I have everything right there then they must be trying to go on the "old standard" of the "gold standard" for diagnosis is positive biopsies. Am I right?

I know you hate eating more gluten for longer yet but if that's what it takes for the NHS then I guess that's what it takes. I'm so sorry they are putting you through this. You're so close at this point I would hate to see you back off now. It certainly sounds like they're trying.

Sterling Rookie
Sterling
Posted
  • Author
12 hours ago, squirmingitch said:

So you're saying they say you do have celiac disease based on the positive blood work twice now. I understand they say the biopsies are negative. And you're saying they want you to eat even greater quantities of gluten for 6-8 weeks & then repeat the endoscopy with biopsies but they want to go deeper in the intestine.

Assuming I have everything right there then they must be trying to go on the "old standard" of the "gold standard" for diagnosis is positive biopsies. Am I right?

I know you hate eating more gluten for longer yet but if that's what it takes for the NHS then I guess that's what it takes. I'm so sorry they are putting you through this. You're so close at this point I would hate to see you back off now. It certainly sounds like they're trying.

Thank you, squirmingitch

This is pretty much where I stand after a great many investigations except that I have had the endoscopy and the colonsocopy and it is an enteroscopy that is proposed. The celiac experts are absolutely certain that I have celiac disease based upon now two repeats of a wide variety of blood tests despite the normal  biopsies. So the "gold standard" is not so gold.  They want jejunal biopsies.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Thank you for clarifying that. Well. My goodness. I can only give you my opinion - you have to make your own decision. 

SINCE the celiac experts are absolutely certain you have celiac disease then you could propose to them that you don't want to eat gluten any longer just to satisfy their desire to poke around inside you any more. You can tell them that you are going gluten free right now & instead of jejunal biopsies they can judge on your response to the gluten free diet. They are already convinced of your dx so screw them. Personally, I wouldn't be their guinea pig any longer. 

Sterling Rookie
Sterling
Posted
  • Author
1 hour ago, squirmingitch said:

Thank you for clarifying that. Well. My goodness. I can only give you my opinion - you have to make your own decision. 

SINCE the celiac experts are absolutely certain you have celiac disease then you could propose to them that you don't want to eat gluten any longer just to satisfy their desire to poke around inside you any more. You can tell them that you are going gluten free right now & instead of jejunal biopsies they can judge on your response to the gluten free diet. They are already convinced of your dx so screw them. Personally, I wouldn't be their guinea pig any longer. 

I think, squirmingitch, that you well understand my frustration.

The overseeing consultant at the university hospital that I am attending is a leading celiac researcher so the approach in my instance may well be non-standard. I have considered just calling it a day and moving onto the non-gluten diet, but this is tempered by my concern that I should know if there are smaller intestine changes. I keep thinking that I am coming to the end of the tests.    

squirmingitch Veteran
squirmingitch
Posted

Ahhhhhhhh, I begin to see more clearly now. 

"The overseeing consultant at the university hospital that I am attending is a leading celiac researcher"

This makes one wonder if his motives are entirely altruistic or whether they are influenced by the desire to put a feather in his own cap & write a paper on this. 

Hey, nevermind me, I am admittedly jaded and a bit rebellious:rolleyes: to boot.

IMHO, for them to ask you to do this, they OWE you full disclosure by presenting all the results of ALL the testing including the pathology reports of the endoscopy they performed. After all, it is you who are risking your health not them. Perhaps you could have a "sit down" with the overseer and relate this line of reasoning to him. 

I DO understand where you are coming from as well but I still think you should have access to all the lab work so you can make a fully informed decision. 

I wish you well my friend & support you no matter what you decide and hope you can come to a decision without second guessing yourself. 

Please let us know how it goes. 

mommida Enthusiast
mommida
Posted

There are two things that stand out for current research.  Zonulin levels, which are showing up in non-celiac individuals who are reacting to gluten.  Eosinophilic Gastro Intestinal Disorders (EGID)- linked to Celiac disease especially if gluten is a "trigger" the individual.  (but eosinophil levels should have been screened by the pathologists in your biopsy samples- and damage can be seen during the scoping (unless the damage is deeper)

While I don't want you to be a human guinea pig (also known as a Cavy), I do want you to be correctly diagnosed so you can get healthy.  If there is any eosinophil involvement, there may be more than one trigger (gluten) that is making you ill.  If you decide not to further test, I urge you to keep a food journal.  The journal may help you track down any other further food intolerances and keep you on a healthy track in your diet.  When you are hungry and the only gluten free item you can find is a bag of potato chips -well you have to be more proactive planning out a healthy gluten free diet.

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. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    2. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    3. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    4. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    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

    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • 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.