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

Update....... Confused More Than Ever

troykm

By troykm
in Doctors

Recommended Posts

troykm Apprentice
troykm
Posted

Ok I am a person that needs yes or no. Either I have celilac or I don't. Lol

Today I went back to my specialist. My genetic test is still not back until tomorrow so still waiting for that one. My other blood work is great. Normal antibody test and all vitamin and mineral levels are great. So Dr Gi is still hesitant to say yes 100% to celiac. As I have been gluten free for 3 weeks now she said there is no point doing more biopsies now.

But because my initial biopsy was positive even though it was only a screening biopsy as opposed to a diagnostic biopsy (3 sections taken instead of 8) but all 3 sections showed villi damage and increase in those cells too. The lab said "indicative of but not diagnostic of partially treated celiac disease, recommend serological investigation". So because of that biopsy and the fact that after 3 weeks gluten free I'm feeling better and things are changing as one would expect if I were celiac, she wants me to stay gluten free and go back in 3 months for follow up and at that point she may want to do a gluten challenge for a month and then do more tests and biopsies then.

I need an answer.

If I had only negative blood work done and responded to gluten free ok could safely say it's just gluten intolerance. But because the biopsy picked up the damage, something is causing it!

Symptom relief so far:

Foggy brain almost gone

Sleeping better

More awake during the day

Sinus are clear for the first time I can ever remember

Post nasal drip is gone (this I have had since I was a child and it has never gone before)

Gerd is gone! No reflex, no burping, no food coming back up.

Bad breath during the day going. I used to be able to taste it.

Bloating receding

Stools changing towards solid but still tan colour and float.

Anxiety gone (normally in this situation I would be having panic attacks waiting for results)

Irritability going.

Brain working again. I am not fumbling for words anymore and I feel sharper.

My sister has just been diagnosed from the blood test her TTG WAS 300+ and the one that should be under 5 was 42. So family link is there.

I jjust don't know. I'm gonna stay on the diet and hope my genetic test lights up tomorrow but even then Dr won't say yes. :-(

Is it celiac or just gluten intolerance and something worse causing the damage?

I'm not lactose or fructose intolerant.

Help me lovely people :-)

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

Ok I am a person that needs yes or no. Either I have celiac or I don't. Lol

With a necessity for a yes/no, I'd be tempted to shift the question to "either I feel better gluten-free or I don't ".

troykm Apprentice
troykm
Posted
  • Author

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.

Gemini Experienced
Gemini
Posted

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.

You had a positive biopsy, your sister is a diagnosed Celiac, and you have had a positive response to the diet....explain to me why this hasn't convinced you? You could keep eating gluten for another biopsy down the road but are you willing to trash your intestines completely and develop other AI diseases to convince your doctor to baptize you as an official Celiac?

Having negative blood work and a positive biopsy is all too common for a Celiac. It sounds like you are being swayed by a doctor who does not know how to diagnose Celiac Disease. From what you have described, you have Celiac. I hope you do the right thing and stay gluten free!

frieze Community Regular
frieze
Posted

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.

Don't think I have ever seen the term "screening" used with an endoscopy when biopsies have been done.

Either those specimens were positive or not. Sounds like an attempt at duplicate procedures to make money. Going gluten free and continuing to pursue other reasons for damage are not mutually exclusive.

See if you can get your specimens sent to another lab for rereading.

troykm Apprentice
troykm
Posted
  • Author

You had a positive biopsy, your sister is a diagnosed Celiac, and you have had a positive response to the diet....explain to me why this hasn't convinced you? You could keep eating gluten for another biopsy down the road but are you willing to trash your intestines completely and develop other AI diseases to convince your doctor to baptize you as an official Celiac?

Having negative blood work and a positive biopsy is all too common for a Celiac. It sounds like you are being swayed by a doctor who does not know how to diagnose Celiac Disease. From what you have described, you have Celiac. I hope you do the right thing and stay gluten free!

Yes I know it sounds silly but after being misdiagnosed for so many years has made me question everything. I would love for this to be celiac because it would be easy to treat. But I just can't help thinking what if it's wrong and I'm missing something more serious. It's not a silly thought but i agree not helpful.

I'm staying gluten free. Thanks everyone for your answers :-)

kareng Grand Master
kareng
Posted

So...you had enough damage that they found it with only 3 biopsy samples? The reason 8-12 samples is recommended is because some people don't have enough damage to find it with only 3 samples.

I guess you can live in denial for a few more years. That denial can lead to the more serious issues you are looking for.

I know you don't want to have Celiac, none of us really do, but looks like that is what you have.

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

Celiac.com Sponsor (A8-M):


troykm Apprentice
troykm
Posted
  • Author

I really want this to be celiac. But when the Dr says "this list of diseases can also cause villious atrophy" you start to wonder when the tests don't all point to yes.

eatmeat4good Enthusiast
eatmeat4good
Posted

Here is the Yes/no for you.

Symptom relief so far:

Foggy brain almost gone- YES!

Sleeping better- YES!

More awake during the day- YES!

Sinus are clear for the first time I can ever remember- YES!

Post nasal drip is gone (this I have had since I was a child and it has never gone before)- YES!

Gerd is gone! No reflex, no burping, no food coming back up.- YES!

Bad breath during the day going. I used to be able to taste it. - YES!

Bloating receding- YES!

Stools changing towards solid but still tan colour and float.- YES!

Anxiety gone (normally in this situation I would be having panic attacks waiting for results)- YES!

Irritability going.-YES!

Brain working again. I am not fumbling for words anymore and I feel sharper.-YES!

My sister has just been diagnosed -YES!

Do positive biopsies diagnose Celiac? -YES!

Is it commonly known as the Gold Standard of diagnosing Celiac?- YES!

Is there any other disease that has all these symptoms AND they all go away when you go gluten free?-- NO!

Celiac?- YES!

I think you are diagnosed...

And I think any other Dr. than the one you have would say you are Celiac.

beebs Enthusiast
beebs
Posted

What were the list of the other things that cause flattened villi? And are you experiencing any symptoms that sound similar to any of those things? Sounds like celiac to me, I'm not a doctor obviously.

GFinDC Veteran
GFinDC
Posted

Casein sensitive enteropathy and parasites are a couple of other villi flatteners' But neither should improve because of a gluten-free diet.

nvsmom Community Regular
nvsmom
Posted

Casein sensitive enteropathy and parasites are a couple of other villi flatteners' But neither should improve because of a gluten-free diet.

This is a really good point! Other problems can cause villi flattening but your doctor wants you to go gluten-free to see if you feel better because he thinks it could be celiac. gluten-free diets only help celiacs so it sounds like you are in the process of confirming the diagnosis through diet... successfully. I guess that's the good and bad news all rolled into one, isn't it?

I believe I've seen stats stating somewhere between 20-30% of celiacs have negative blood tests, and their ceilac is only found through biopsy or vitamin deficiencies. It sounds like you fall into this group.

I hope you continue to improve on the diet. :)

MitziG Enthusiast
MitziG
Posted

Please give me your address so I can direct the skywriter to spell out YOU HAVE CELIAC.

Seriously....if you keep looking, you will find a reason to convince yourself that it isn't celiac. But it won't make it true.

troykm Apprentice
troykm
Posted
  • Author

Please give me your address so I can direct the skywriter to spell out YOU HAVE CELIAC.

Seriously....if you keep looking, you will find a reason to convince yourself that it isn't celiac. But it won't make it true.

Thanks it's all good now :-) diagnosis is 100% celiac. No other health issues. Onwards and upwards from here

cavernio Enthusiast
cavernio
Posted

For what it's worth, most food intolerances are *only* diagnosed by 'Not eating it, I feel better, and when I try it again, I feel worse'. There just don't exist accurate enough tests to say otherwise. And I say this now because celiacs often have other food intolerances which we only figure out once we've been gluten free.

It's very frustrating not knowing 100% for things, but for the vast majority of medical diagnoses, 100% certainty is just an ideal we strive for.

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):


  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.