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

Saw Specialist 2nd Time

num1habsfan

By num1habsfan
in Related Issues & Disorders

Recommended Posts

num1habsfan Rising Star
num1habsfan
Posted

Not sure if any of u remember but in February I had a endoscopy, and by some chance I got no call or letter to come back so went to my family doc. My family doc said nothing showed in results. Here's the crazy thing...

Last month I got a letter from the specialist saying I didn't show up to my May 14th appointment, so I had my follow up on Thurs. (Aug.23rd). There was plenty of interesting things that went on..

1. My family doc LIED TO ME!!! There was 2 things that were shown on the endoscopy results. I have a minor hiatus hernia, not bad enough to need treatment but enough to cause heartburn (and those mystery chest pains I never knew what they were!!). Also, it was refractory sprue he tested for (not Celiac) and because that didn't show up, this specialist actually BELIEVES ME that it's not Celiac-related causing my pains!

2. He gave me a prescription for something that he says is stronger than greatly Buscopan and should give me some pain relief

3. He's going to get a copy of my tests from Calgary, I explained I went there and my family doc told him to only test for Celiac even though the specialist agreed to test for Crohn's etc.

4. On Sept. 13th I go back for an ultrasound and small bowel follow through. If he's not satisfied with those results, he'd like to do a colonoscopy. :blink:

5. I had to get bloodwork done: CBC, CREAT, LYTE4, FER, UREA, CRPH, and under "other" he wrote Fe saturation

....Thats the whole story. I know it may not seem like a big deal but this is soooo overwhelming for me. In the last 15 months this will be 8 major tests, what person would even imagine having to do all that??? This is going to make university so much harder, too :(

If you have advice or whatever, please reply. I'm in need of some words and thoughts, even if it's not positive

~ Lisa ~

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

Celiac.com Sponsor (A8-M):


Acersma Rookie
Acersma
Posted

I too have a hiatal hernia. Even minor ones are a major pain. I deal w/ a lot of chest pain. It feels like when I am bloating it pushes my lungs and everything into my chest and I get shortness of breath and of course the horrible reflux and heartburn. My advice for that is to wait 3 hours to lie down after all meals. Elevate yourself in bed either by elevating the mattress or your pillows. And no chewing of pills or of gum. Makes more acid which you don't need and eat very blandly for a while. hope something here was helpful.

Jody

elye Community Regular
elye
Posted

Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Wow, Lisa...that's a lot to have been living through. At least with some answers you can hopefully move toward some quick recovery. If I recall correctly, you are also a type one diabetic. That alone is enough for anyone! No sage advice, just best wishes... :)

Nope, not diabetic (yet).

But everything else is more than enough already. I give this guy credit for trying to find what's wrong and believing it could be Crohn's, but just hate the non-stop testing :(

~ Lisa ~

elye Community Regular
elye
Posted

Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Sorry, my mistake...confused you with someone else who's a fellow diabetic. Well, maybe that's a little light in your current darkness..at least there are no blood sugar issues! :)

Yup very true!! But these 1 1/2 years of being undiagnosed is more than enough, these tests SUCK obviously but I don't want to say no in case my some chance they actualy find the answer to whats wrong and whats making me worse :huh:

~ Lisa ~

elye Community Regular
elye
Posted

Lisa, I've got a question for you that I've wondered about: what's the difference between celiac sprue and refractory sprue?

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

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

Elye, refractory sprue is where a person with celiac for some reason or other doesn't heal while they are gluten free. With some people the villi just never grow back even though they are gluten free.

Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Lisa, I'm glad there weren't signs of refractory sprue! Also, it's good to hear that finally there's a doctor who takes it all seriously. I've been around here long enough to know how hard it has been for you. I wish you strength with all the testing!

Pauliina

Paulina, thanks for explaining what that is for me to Elye. It's one of those things that you know what it is and how it affects, but don't know how to put it into words really, eh??

Also thanks for your wishes, I can use all the strength possible, my friends have been amazing so far (the true ones anyways!). You people are all what keeps me going.

~ Lisa ~

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.