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

Wow! I'm Glad I Found You Guys!

babyofthefamily

By babyofthefamily
in Doctors

Recommended Posts

babyofthefamily Newbie
babyofthefamily
Posted

I just found this forum this morning and am thanking my lucky stars I did.

My sister was diagnosed with Celiac last fall after an 11 year battle with classic Celiac symptoms. A severe bout of diarrhea landed her in the hospital for a week and a knowledgeable gasto Dr. did a biopsy which concluded the dx. I knew I probably shoud have been tested after reading a bit about the disease on the internet, but chose not to, seeing as I had no classic symptoms. Except for that itchy rash. I have been "itchy" for 8 years.

I broke out in an awful rash in the summer of '89. After seeing 2 dermotologists over a period of 10 months, and getting nowhere, I started having other symptoms I could no longer ignore. Long story short - I was dx August '99 with Hodgkin's Lymphoma. I attributed my "itchies" to that. Looking back now, I don't think it was the Hodgkin's - I think it was (or is) Dermatitis Herpetiformis.

After visiting my oncologist last month I just happened to mention my sister was Celiac positive and that I had my itchy rash AGAIN (it comes and goes). I had strongly suspected since last fall after investigating my sister's condition that I, too, had Celiac.

That wonderful doctor told me "It's a simple blood test" and after a few clicks on his computer I was off to the lab for mine. A week later he called to tell me I was right; my blood test was positive for Celiac.

I immediately did a search for info at my local library where I was fortunate enough to find Dangerous Grains.

Two days ago I visited the gastro dr. he recommended. Not exactly what I had hoped for. After a brief (3 minute) consultation, whereby he asked me the classic questions, any bloating, diarrhea...are you of Irish descent...yada, yada, yada. I told him "No" I believe I have the dermatological form. Oh, (as he looked up the name ina book) Dermatitis Herpetiformis? I knew what it was called and he didn't. That kinda freaked me out. He escorted me out of the office to his receptionist who would "schedule an intestinal biopsy". I asked him if I couldn't just get a skin biopsy (MUCH less intrusive and less expensive). No, no. This first, then I'm going to send you to a dermatologist for a skin biopsy. Does this make sense??? Shouldn't you do the less instrusive test first? I thought so, especially after reading that people who test positive for DH don't always have positive intestinal biopsies.

My husband says, forget all the darn tests. Just quit eating gluten, and if you feel better - there's your answer.

After all that I've been through with my Hodgkin's, I'm really sick of doctors and tests and hospitals and procedures and needles and........ you get the picture.

So what do you think guys? I have the positive blood test, a sister with a positive dx, oh, and I STRONGLY feel that my 15 year old son has this. What the heck should I do.

P.S. When my son heard all the facts, he went gluten free immediately. today is day 4 for him.

Thanks, Margie

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Margie, and welcome to our board.

Wow, you sure sound like you have DH, and you obviously have celiac disease. Personally, I think you're absolutely right to go for a skin biopsy, if you want an official diagnosis. But your husband is right, too. Unless you need a piece of paper, stating officially that you have celiac disease, I would just go on the diet and forget about the stupid tests.

Your son has the right attitude, just go on the diet, and the response to that will tell you all you need to know.

mamaw Community Regular
mamaw
Posted

Hi Margie

welcome to the group. And a big hooray for your son for going off wheat & gluten . At his age he seems to know alot about his body and what makes him feel better.... I think it a matter of choice on what you want to do. Some want a dx on paper and a clear ,positive no mistake about dx, others just seem to know that going gluten free and feeling better is enough for them. You husband's way is of course the lesser of the two evils...........I'm glad you may be on the road to recovery at last. Also it is much easier when the whole family is eating one way, sometimes I have to prepared two separate meals and its a real drag....

get better

mamaw

jerseyangel Proficient
jerseyangel
Posted

Hi Margie! Glad you found us :) It is obvious to me that you have Celiac. There are doctors who will diagnose it with positive blood work, and a positive response to the gluten-free diet. If you plan to go ahead with the testing, you need to stay on gluten right up until the test. Dr. Green, in his book, states that a positive biopsy for dh is a positive Celiac diagnosis. If I were in your position, and I wanted to be tested further, I would opt for the skin biopsy. All of that said, if you feel that further testing is unnecessary for you, you could go completely gluten-free now. Best of luck to you and your son!

Nancym Enthusiast
Nancym
Posted
My husband says, forget all the darn tests. Just quit eating gluten, and if you feel better - there's your answer.

After all that I've been through with my Hodgkin's, I'm really sick of doctors and tests and hospitals and procedures and needles and........ you get the picture.

Do you think you could stick to the diet without an official diagnosis? Some people can't, or use that as an excuse to cheat. Some people can't stick to the diet even wtih an official diagnosis. But only you know yourself well enough to answer that.

For me, the fear of getting more autoimmune diseases, feeling nasty, and possibly getting cancer, is enough to make me stick with it.

I'd definitely do the skin biopsy first. Absolutely no question about that. If you get a positive, there's no need for an intestinal biopsy.

wolfie Enthusiast
wolfie
Posted

I would definitely do the skin biopsy first. Less expensive and much less invasive.

Glad you found this board. I have learned more from these folks then from any dr that I have seen. Welcome!

nettiebeads Apprentice
nettiebeads
Posted

[That wonderful doctor told me "It's a simple blood test" and after a few clicks on his computer I was off to the lab for mine. A week later he called to tell me I was right; my blood test was positive for Celiac.

My husband says, forget all the darn tests. Just quit eating gluten, and if you feel better - there's your answer.

After all that I've been through with my Hodgkin's, I'm really sick of doctors and tests and hospitals and procedures and needles and........ you get the picture.

So what do you think guys? I have the positive blood test, a sister with a positive dx, oh, and I STRONGLY feel that my 15 year old son has this. What the heck should I do.

P.S. When my son heard all the facts, he went gluten free immediately. today is day 4 for him.

Thanks, Margie

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

You already have been officially diagnosed - positive bloodwork.

The only thing a biopsy would be good for now is to see (a) if there is any villi damage, and to what extent and (B) to possibly do another biopsy in two years to see what improvement has taken place with the gluten free diet and © to make sure there are no other complications in there due to the undiagnosed celiac for so long.

Kudos to your son for being very smart for his age! That is testament to your parenting skills, you raised a smart kid!

Welcome!

Karen

Guest nini
Guest nini
Posted

I was dx'ed with positive bloodwork and positive dietary response only, I DID NOT HAVE THE BIOPSY, the Dr. said with my extremely high positive bloodwork, the biopsy was uneccesary, and it has been confirmed by my overwhelmingly positive response to the diet.

If you have a sister with it AND your blood work wass positive, you absolutely have your answer and do not need any further testing. Just forget the rest of the tests, know that you do have Celiac and get on with the business of getting healthy. You do not need a Dr.s permission to be on the diet. oh, and kudos to your smart son for going on the diet... take charge of your own health, the medical community for the most part is still sadly misinformed and operating on outdated information when it comes to Celiac, there are a few trailblazing experts out there that are recognizing that positive dietary response is THE MOST VALID diagnostic tool there is.

Guest mmc
Guest mmc
Posted

I was just dx'd by positive reaction to the diet. I have had my dh for 10 years, went to this doc, that doc, and it was always something...fungal infection, latex allergy, ect... After 3 1/2 weeks on the diet, it's beginning to go away. All of my gastro symptoms are getting better and I could go back to gluten even if I tried.

But I had to drop my original doctor and find a new one. My new dr said "We could run the tests, but who cares what they say. You have PROVEN that you are at the least gluten intolerant." and gave me a dx of celiac.

It's up to you...if you don't want the intestinal biopsy, get the skin biopsy, or just go gluten free. You don't need to rely on anyone but yourself. And you've already got positive blood work....there's your dx. Now just get to being healthier!

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. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      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...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      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.
    3. 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...
    4. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    5. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
  • 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

    • 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. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.