Rate this topic

Recommended Posts

Hi All,

I was told by my Primary Care (in May) that I had celiacs; this was from bloodwork the GI did and I assumed that they conferred (they are colleagues and she got me in to see him). I never called the GI for test results because of what the PC told me. I had follow up appt with GI on Monday and he informed me that I DO NOT have celiac disease. Like, hello. I've been gluten-free since May/June. He's doing a biopsy in September to confirm the diagnosis, so I am (happily for now) eating normally.

My numbers?

Antigliadan AB Panel:

Antibody, IGA - 23 (normal 0-19 units)

Antibody, IGG - 54 (normal, 0-19 units)

Immunoglobulins (serum)

IGM 386 (normal 48-271)

IGA 418 (normal 81-463)

IGG 1337 (normal 694 - 1618)

He said my tTg was 3

I do have ITP, an autoimmune disease, and NASH (liver). Have been tested for leukemia & lymphoma and came back negative.

You all know more about this than I do - what gives? Did the gluten-free diet make me feel any better? I was never really sick. I will say that something I was eating that was gluten-free (muffins, etc) was causing me to bloat and have a rash; it has gotten significantly better in the past 3 days of eating.

I see my PC tomorrow and will run this by her, but I am more then a little reluctant to take her word on anything right now.

Thanks!

Ann

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I am sorry to say, your numbers suggest you do Celiac. I'm sorry because your doctor sounds confused as well as confusing. This is no way to regain your health. Good luck. :(

Share this post


Link to post
Share on other sites

Your numbers do suggest a problem with gluten. They don't come back elevated for no reason.

Can't really tell with symptoms..some people just never get symptoms with it.

What you could do is get tested for what you did last time and see if those levels that were high before went down since you have been on the diet.

Share this post


Link to post
Share on other sites

Isn't the Ttg the bottom line for diagnosis? (other then biopsy). And that was low, which is what he made his diagnosis on. And would the other numbers be high due to another autoimmune disease? Just curious.

Sigh. I dont know what to think/do now. This doctor was recommended as a celiac doctor.

Ann

Share this post


Link to post
Share on other sites

Hi Ann,

So was your Ttg negative? That one's very specific for celiac disease. With the positive antigliadan numbers you could very likely have a problem with gluten, but not have celiac disease. There is another very specific test, endomysial Iga, that you might want to get once you've been back on gluten for a while.

I was in a similar position (test-wise) and had genetic testing to help rule out celiac disease since it was important to me to have a definitive diagnosis. The test came back negative and I am told I now have less than a 1% chance of having the disease. I suspect something's up, maybe an intolerance, maybe something even more exotic than celiac disease, maybe nothing. I'm back on gluten for a month or two and plan to get my Ttg and EmA testing done repeated. I've got some good doctors supporting me in all this.

The thing about the genetic testing is that something like a third of the population has the markers, so I would think the test would only be valuable for ruling out celiac disease. I understand that the biopsy is still the gold standard, despite the fact that many doctors will diagnose without it.

Good luck to you. The on again off again diagnosis is quite a roller coaster, isn't it?

Alison

Share this post


Link to post
Share on other sites
Ads by Google:


The tTG is like the best test BUT it is specifically there to detect damage. The EMA is another good test and that is also used to detect damage. If there is none there yet then that would come back negative.

The IgA and IgG are not as accurate but they are still helpful and are used to detect the sensitivity to gluten. This is usually one of the first things you see positive.

Share this post


Link to post
Share on other sites
Hi Ann,

So was your Ttg negative? That one's very specific for celiac disease. With the positive antigliadan numbers you could very likely have a problem with gluten, but not have celiac disease. There is another very specific test, endomysial Iga, that you might want to get once you've been back on gluten for a while.

I was in a similar position (test-wise) and had genetic testing to help rule out celiac disease since it was important to me to have a definitive diagnosis. The test came back negative and I am told I now have less than a 1% chance of having the disease. I suspect something's up, maybe an intolerance, maybe something even more exotic than celiac disease, maybe nothing. I'm back on gluten for a month or two and plan to get my Ttg and EmA testing done repeated. I've got some good doctors supporting me in all this.

The thing about the genetic testing is that something like a third of the population has the markers, so I would think the test would only be valuable for ruling out celiac disease. I understand that the biopsy is still the gold standard, despite the fact that many doctors will diagnose without it.

Good luck to you. The on again off again diagnosis is quite a roller coaster, isn't it?

Alison

<{POST_SNAPBACK}>

Alison,

My tTg was 3 ... he said low, so no celiac. And yes, something is probably up. Maybe an intolerance. EmA - I'll have to look that up. I've had a battery of blood tests (9 vials at one time! - usually 3 or 4 is once every 3 weeks or so) so I'm sure I've been tested for everything.

I'm on gluten for the biopsy .... but I really don't eat that much of it normally. And having a problem with gluten and NOT having celiac disease is OK with me!

Ann

Share this post


Link to post
Share on other sites

My doctor told me I didn't have celiac disease either because my biopsy came back negative. I KNOW I am gluten intolerant, though, which may be what you are. If I would have listened to my doctor, I would be eating as much "whole grain wheat" as possible because he diagnosed me with IBS. No offense to him, but I know my body and I know he is WRONG!!!!!!!!!I didn't lose weight when eating gluten, I gained it. Anyway, I am finally back to normal now that I am eating gluten-free

Share this post


Link to post
Share on other sites
My doctor told me I didn't have celiac disease either because my biopsy came back negative.  I KNOW I am gluten intolerant, though, which may be what you are.  If I would have listened to my doctor, I would be eating as much "whole grain wheat" as possible because he diagnosed me with IBS.  No offense to him, but I know my body and I know he is WRONG!!!!!!!!!I didn't lose weight when eating gluten, I gained it.  Anyway, I am finally back to normal now that I am eating gluten-free

<{POST_SNAPBACK}>

Have I missed something - why would gaining weight when eating gluten-free indicate anything? Other then the fact that I was hungry all the time, so I ate more.... and I ate worse. Potatoes to fill me up (fattening, I know) .... hate fruit, so candy ....

I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life.

I just don't know which way to turn anymore.

Ann

Share this post


Link to post
Share on other sites

Many GIs will not diagnose celiac disease without a positive biopsy. I had one who looked at the blood work and did not see a reason to put me through the biopsy because I was already gluten-free and doing so well. An insurance change forced me to another one who was adamant that it could not be called celiac disease because I had not had a positive biopsy done. It did not matter that I had accidentally gotten glutened and was sick as a dog because of it.

Share this post


Link to post
Share on other sites


Ads by Google:


Guest nini
Have I missed something - why would gaining weight when eating gluten-free indicate anything?  Other then the fact that I was hungry all the time, so I ate more.... and I ate worse.  Potatoes to fill me up (fattening, I know) .... hate fruit, so candy ....

I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life. 

I just don't know which way to turn anymore.

Ann

<{POST_SNAPBACK}>

I think she said she gained weight eating Gluten. NOT Gluten FREE. When I ate gluten I gained so much weight. I couldn't lose weight at all no matter how little I ate, because my body was reacting badly to the gluten. Since I've been gluten-free a little over 2 years now, I've lost about 80 pounds altogether and the only thing I'm doing different is eating gluten-free.

Share this post


Link to post
Share on other sites

It wasn't that he wouldn't diagnose it - he felt that the Ttg was too low to diagnose it, but would do the biopsy to double check. He was confident that it was not celiac disease ....

Share this post


Link to post
Share on other sites
I think she said she gained weight eating Gluten. NOT Gluten FREE. When I ate gluten I gained so much weight. I couldn't lose weight at all no matter how little I ate, because my body was reacting badly to the gluten.  Since I've been gluten-free a little over 2 years now, I've lost about 80 pounds altogether and the only thing I'm doing different is eating gluten-free.

<{POST_SNAPBACK}>

I stand corrected - she gained when eating gluten. Thanks for pointing that out. I gained when I ate gluten-free .... and got bloated. Now that I'm eating normally the bloating is gone ..... leave it to me to be weird.

Share this post


Link to post
Share on other sites
Guest nini

you may have other food intolerances. It is worth keeping a food diary and tracking any and all reactions (or none) from whatever you eat. You may see a pattern start to emerge. Just a thought.

Share this post


Link to post
Share on other sites
you may have other food intolerances. It is worth keeping a food diary and tracking any and all reactions (or none) from whatever you eat. You may see a pattern start to emerge. Just a thought.

<{POST_SNAPBACK}>

I had actually been considering doing that before the GI doc told me it wasn't celiacs. It was definately something gluten-free doing it to me .... I was eating the english muffins and corn muffin (George's). Rest of the time it was meat, potatoes, etc. Normal stuff. Feel way better now .... either that or I'm trying to convince myself of it :D

Share this post


Link to post
Share on other sites
Guest nini

you could be allergic to corn. It's used in a lot of gluten free products. Corn is also very hard to digest.

Share this post


Link to post
Share on other sites

The absolute diagnostic tool is the EGD and the biopsy of the villi. If this hasn't been done I would suggest it be scheduled.

Share this post


Link to post
Share on other sites
The absolute diagnostic tool is the EGD and the biopsy of the villi. If this hasn't been done I would suggest it be scheduled.

<{POST_SNAPBACK}>

Hi,

I have a biopsy scheduled for September. I don't know about the EGD - it was mentioned. I haven't had any problem eating normally ... but I know that it might not be affecting my stomach at this point in time. I think my biggest mistake was taking my primary care's diagnosis and not calling the GI for the blood results (in May). Come to find out, she didn't even know what a tTg was ....

thanks for the advice. I'll let you all know what the results are.

Ann

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   10 Members, 0 Anonymous, 399 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.