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

Dilemma! Advice Needed Please

Noodle

Recommended Posts

Noodle Newbie
Noodle
Posted

Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted
Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x

If you feel you dont need an "official" diagnosis, skip the tests and stay gluten-free if you feel better on the diet! If need a diagnosis-for instance to have your health plan cover your expenses, that's a different matter.

I had a positive blood test, started the diet, then went to see the GI. He said that he didn't think I have Celiacs, because we just did en endoscopy and he didnt see anything- he did an UPPER endoscopy of my stomach and esophogus! When I told him the diet had eliminated all my symptoms, he then wanted to do a bunch more tests. I told him to forget it!

The only thing that matters is if the diet works for you. You dont need an endoscopy to feel better, IMHO.

Noodle Newbie
Noodle
Posted
  • Author

Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

Ahorsesoul Enthusiast
Ahorsesoul
Posted

When doctors want to to more testing I always ask what will they do differently after seeing the test results?

Gemini Experienced
Gemini
Posted
Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

I wouldn't say there is a "real" threat of malignancy but there are those who would feel more comfortable if they have a picture of what their intestines look like.

Some need to see damage in order to stick to a gluten free diet. I think people need to do whatever makes them feel comfortable in obtaining a diagnosis but Celiacs should not fear having cancer any more than the general population. There is too much fear these days of that anyway. Most people do well on a strict gluten-free diet and recover just fine.

The reason you may notice more of a reaction to other foods is that once you cut out gluten, whatever additional intolerances/allergies you may have, come to the forefront. It's extremely common to have more than one food issue.....for many it's dairy. However, eggs and soy are high on the allergy spectrum so you may have to cut out more as you go along. Either that or you could request allergy testing on top of Celiac testing.

If you want to have the endo, then you could still cut out gluten for good and have the test done whenever they book it. Then it would be a matter of seeing how well you are healing and not necessarily to diagnose Celiac Disease. Let's face it, you're English so the odds of having Celiac Disease are way up there anyway. ;) It all depends on how important an official diagnosis is to you.

I was diagnosed via blood work and refused the endoscopy because I was so deathly ill, I couldn't face eating gluten for one more meal. Actually, I wasn't even eating at the time so I was getting desperate. I had an official diagnosis with the blood work and have done so well on the diet and with my recovery, I have not felt the need to be scoped. Good luck!

Noodle Newbie
Noodle
Posted
  • Author

Thanks Guys.

Very helpful and that would certainly explain the egg allergy. I guess spicy foods would set me off because they are irritants rather than allergens?

Why does being English make me more predisposed to Celiac?

Thankfully alcohol still remains pain free!!!!! my doc is treating me with proton pump inhibitors at the moment as she is wondering if it may be an ulcer instead but if it was surely alcohol would be impossible? Don't know whether to stop the drugs as they aren't making much of a difference.

Thanks for your input

T

Rondar2001 Apprentice
Rondar2001
Posted

One thing to consider with the endoscopy, your doctor may be looking for other things besides just celiac disease, especially in light of your other food issues.

I would confirm exactly what they might be considering before turning down the endoscopy.

Good luck and hope it goes well for you.

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

I believe the reference to cancers was given to a person with a family history of cancer. If you don't have that history, I wouldn't worry about that aspect of it.

I also would ask the dr's reasoning behind the test. Maybe there is something he's looking for that you didn't consider.

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.