Eric Madsen

Positive tTG, negative biopsy, then a negative tTG?

Rate this topic

Recommended Posts

I am a 40 year old male and would like some help from all the public experience that is on this site.  I'm not quite desperate yet, but getting very, very close!  Sorry for the long post, but as I've heard, celiac troops are used to a lot of history review.


I have had intestinal problems for about 20 years.  I had my gall bladder removed when I was 25, doctors assumed that was causing some problems with keeping some foods down and pain radiating from my belly button around to about the middle of my back. 

I've been going to the doctors for about 5 years now for different problems, mostly with no results.  My symptoms range from joint pain, abdominal pain, headaches, severe irritability and fatigue.  

2 years ago I was diagnosed with diverticulitis after an emergency room visit, x-rays and a colonoscopy.

The main reason for my visits in the last 3 years was joint pain.  All 7 of my aunts and uncles have some sort of autoimmune disease (non celiac disease, diagnosed anyways).  I have been tested for RA numerous times with always a negative result.  One doctor actually told me "You're just getting old" as a reason for my joint pain.  

My latest visit about 6 months ago was different.  I went in to a new, young doctor and told them to run whatever tests they could to get some answers and that I wasn't leaving without some answers.  She was awesome!  She spent a lot of time with me reviewing all past visits with the different doctors, family history and a physical exam.  

She ordered a biopsy of the rash on my butt (which turned out to be DH), other doctors had that rash labeled as something else, ranging from yeast infection to psoriasis and even a "touch" rash, I was told that if I didn't touch it, it would go away.  

My current situation is as follows:  After about what seemed to be 5 gallons of blood drawn, 4 x-rays and an MRI, I had a positive tTG (reading of 99.8). Was told to go gluten free right away, which I later found out was very ill advised, as I hadn't had any other celiac testing done.  I was referred to a GI specialist for an upper endoscopy.  My biopsy came back normal.  The doctor seemed confused by this and ordered another round of blood work.  This time the tTG came back negative.  Reading of 1.2 this time.  My question (finally!) is this: Could I have a reading as high as 99.8, all the various symptoms and the DH but then come back with a negative result???  I did feel better after being off gluten, granted, it was only for about 3 weeks because of the testing.  I'm so confused and disheartened with the latest test results.  Any help would be appreciated.  Thanks in advance!!!


Share this post

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

If you got a diagnosis of DH no further testing is needed. A diagnosis of DH is a diagnosis of celiac. You can get back on the diet and start healing.

Share this post

Link to post
Share on other sites

Antibodies can remain in your system for months to over a year....or go away within two weeks.  It sounds like you were advised to go gluten free and that could have caused your TTG to decrease.  Does your GI know you had been gluten free?  

Some folks with DH have no intestinal or it can be patchy.   The antibodies are primarily in the skin.    If you know that rash was DH, then you have celiac disease.  

Share this post

Link to post
Share on other sites

I had been on gluten for 3 weeks prior to retaking the blood test for the second time.  I had only been on it for about 10 day before having the scope done.  Sounds like I may need to see a different doctor, as I'm the one who had to tell them about the need to ingest gluten before these tests.  Thanks for the replies.  I have messaged dermatologist to make sure on the DH diagnosis, but I'm almost positive it's been confirmed, otherwise I don't know where I would have heard of it.  Is it normal to get a DH diagnosis first and then have at least three doctors take you through more celiac testing?  My DH testing was the first thing I got back.  


Share this post

Link to post
Share on other sites

If a dermatologist did a skin biopsy and the result was positive for DH, then you have celiac disease.  No need for GI testing at all.  

Again, NO ONE can say FOR CERTAIN how fast antibodies build or decline.  That is why the University of Chicago and other celiac centers take a conservative approach.  Their  guidelines for gluten ingestion are long, for example 2 to 4 weeks prior to an endoscopy.  Some people are going to develop damage faster than two weeks and other might take a month.  No one is really studying this stuff in detail.  So best to take a conservative approach.  Some patients can not take a gluten challenge for that length time and are willing to take the risk of a negative test (odds are that if you are getting severe symptoms, damage is being done, but let’s say someone like me, who had no GI symptoms, it could be a bit questionable).  

Again, it sounds like your dermatologist took an appropriate biopsy.  Confirm it, and then go gluten free.  

(Just tossing this in for the heck of it....I had my gallbladder out too as it was non-functioning.  After that I did not have GI issues, but really I still had celiac disease.  celiac disease is like a chameleon.  Symptoms can wax and wane.)



Share this post

Link to post
Share on other sites
Ads by Google:

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

  • Who's Online   20 Members, 1 Anonymous, 524 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/21/2018 - These easy-to-make tortilla wraps make a great addition to your lunchtime menu. Simply grab your favorite gluten-free tortillas, a bit of cream cheese, some charred fresh sweet corn, creamy avocado and ripe summer tomato. Add a bit of sliced roast beef and some mayonnaise and hot sauce, and you’re in business. And it's all ready in about half an hour. If you cook the corn the night before, they can be ready in just a few minutes.
    12 ounces thinly sliced cooked beef, sliced 6 burrito-sized gluten-free tortillas 1 ripe medium avocado, diced 1 large tomato, diced ½ medium red onion, thinly sliced ¼ cup mayonnaise 2 ears sweet corn, husks and silk removed 1 teaspoon olive oil ¾ cup soft cream cheese spread 1-2 teaspoons gluten-free hot sauce of choice Sprouted pea greens, as desired fresh salsa, as desired Directions:
    Heat grill to medium-hot. 
    Brush corn with olive oil. 
    In a small dish, blend mayonnaise and hot sauce. Adjust mixture, and add fresh salsa, as desired.
    Grill corn for 8 to 12 minutes, turning as it browns and lowering heat as needed until corn is tender and charred in some places. 
    Cool slightly; cut kernels from cobs.
    Spread 2 tablespoons cream cheese on one side of each tortilla to within ½-inch of edge; arrange beef slices to cover.
    Spread beef with mayonnaise hot sauce mixture as desired.
    Place a bit of grilled corn kernels, avocado, tomato and red onion in a 3-inch strip along one edge of each tortilla. 
    Fold ends and roll into a burrito shape, and serve. I like to add sweet, crunchy pea greens for some extra crunch and nutrition.

    Christina Kantzavelos
    Celiac.com 07/20/2018 - During my Vipassana retreat, I wasn’t left with much to eat during breakfast, at least in terms of gluten free options. Even with gluten free bread, the toasters weren’t separated to prevent cross contamination. All of my other options were full of sugar (cereals, fruits), which I try to avoid, especially for breakfast. I had to come up with something that did not have sugar, was tasty, salty, and gave me some form of protein. After about four days of mixing and matching, I was finally able to come up with the strangest concoction, that may not look the prettiest, but sure tastes delicious. Actually, if you squint your eyes just enough, it tastes like buttery popcorn. I now can’t stop eating it as a snack at home, and would like to share it with others who are looking for a yummy nutritious snack. 
    4 Rice cakes ⅓ cup of Olive oil  Mineral salt ½ cup Nutritional Yeast ⅓ cup of Sunflower Seeds  Intriguing list, right?...
    Directions (1.5 Servings):
    Crunch up the rice into small bite size pieces.  Throw a liberal amount of nutritional yeast onto the pieces, until you see more yellow than white.  Add salt to taste. For my POTS brothers and sisters, throw it on (we need an excess amount of salt to maintain a healthy BP).  Add olive oil  Liberally sprinkle sunflower seeds. This is what adds the protein and crunch, so the more, the tastier.  Buen Provecho, y Buen Camino! 

    Jefferson Adams
    Celiac.com 07/19/2018 - Maintaining a gluten-free diet can be an on-going challenge, especially when you factor in all the hidden or obscure gluten that can trip you up. In many cases, foods that are naturally gluten-free end up contain added gluten. Sometimes this can slip by us, and that when the suffering begins. To avoid suffering needlessly, be sure to keep a sharp eye on labels, and beware of added or hidden gluten, even in food labeled gluten-free.  Use Celiac.com's SAFE Gluten-Free Food List and UNSAFE Gluten-free Food List as a guide.
    Also, beware of these common mistakes that can ruin your gluten-free diet. Watch out for:
    Watch out for naturally gluten-free foods like rice and soy, that use gluten-based ingredients in processing. For example, many rice and soy beverages are made using barley enzymes, which can cause immune reactions in people with celiac disease. Be careful of bad advice from food store employees, who may be misinformed themselves. For example, many folks mistakenly believe that wheat-based grains like spelt or kamut are safe for celiacs. Be careful when taking advice. Beware of cross-contamination between food store bins selling raw flours and grains, often via the food scoops. Be careful to avoid wheat-bread crumbs in butter, jams, toaster, counter surface, etc. Watch out for hidden gluten in prescription drugs. Ask your pharmacist for help about anything you’re not sure about, or suspect might contain unwanted gluten. Watch out for hidden gluten in lotions, conditioners, shampoos, deodorants, creams and cosmetics, (primarily for those with dermatitis herpetaformis). Be mindful of stamps, envelopes or other gummed labels, as these can often contain wheat paste. Use a sponge to moisten such surfaces. Be careful about hidden gluten in toothpaste and mouthwash. Be careful about common cereal ingredients, such as malt flavoring, or other non-gluten-free ingredient. Be extra careful when considering packaged mixes and sauces, including soy sauce, fish sauce, catsup, mustard, mayonnaise, etc., as many of these can contain wheat or wheat by-product in their manufacture. Be especially careful about gravy mixes, packets & canned soups. Even some brands of rice paper can contain gluten, so be careful. Lastly, watch out for foods like ice cream and yogurt, which are often gluten-free, but can also often contain added ingredients that can make them unsuitable for anyone on a gluten-free diet. Eating Out? If you eat out, consider that many restaurants use a shared grill or shared cooking oil for regular and gluten-free foods, so be careful. Also, watch for flour in otherwise gluten-free spices, as per above. Ask questions, and stay vigilant.

    Jefferson Adams
    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    BMC Pediatrics

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Thank you! Indeed it does help. I read something yesterday also about carrots being a grand idea for recovery, I suppose this goes together. I get a lot of sunlight and I eat plenty of eggs, so that should be good for vitamin D until I can find a decent supplement or some of this cod liver oil. I'll up the carrot intake I suppose too. Right now though honestly, I am taking B12, drinking coconut water, and eating yogurt exclusively. Before that I was mostly eating bland things like rice and eggs, but that got me constipated, so definitely nevermind that for awhile... fixed it as soon as I quit and went for softer foods and a near liquid diet. I'm realizing now from a few screwups and recoveries, this being the worst so far... that what the OP said is very true. Not only that, it may be refreshing to realize that the whole "darkest hour is before the dawn" thing seems to be true of this recovery. I keep getting worse and worse and worse and then I'll have a few hours of amazing respite. So I feel like it happens in cycles and maybe the last purge of gluten is when your body is really freaking out. Let's just get through this already!
    • I am so glad you appealed! Persistence pays off! Yay you!
    • We appealed. First appeal was denied since "no diagnosis" was stated. What we told Medicare was since they had all the claims, they had all the DX and info so just look it up.  Wrong!  The appeal goes to a Medicare contractor who doesn't give a flip about you--you have to "spoon feed" them all the info that Medicare ALREADY HAS so they can process.  We were referred to a 2nd appeal status.  I did some internet research and found the document they mentioned as the basis of the denial.  In one paragraph of that guidance document it specifically states that CELIAC DX makes these blood test reimburseable. So at this 2nd stage of appeal I sent a copy of this document underlining the paragraphs relating to celiac and a copy of my Doc's DX of celiac.  Just got notice that we WON!  Medicare will pay for the following procedures with a celiac diagnosis: 82746: Blood Folic Acid Serum 82607: Vitamin B-12 Your lab may tell you these tests are NOT COVERED by Medicare and make you pay up front.  They may cite Local Coverage Determination (LCD) #L34914 (do a search for that document)  Under the caption "Group 3 Codes" of L34914 it stated that ICD-10 code K90.0 Celiac Disease is a COVERED DX for CPT codes 82607 and 82746. Don't accept a denial -- appeal it but document as I stated above.    
    • I get 1500 Io of vitamin d a day. That should be enough.  Plus I eat stuff with vitamin d already so I don't know what the problem is. Maybe just the cold. I feel like the vertigo is getting better but not sure.  Bppv maneuvers have not done anything. 
    • Maybe if you join one of those groups you found and post that you want to have lunch with people they will respond? https://www.facebook.com/groups/320392650815/about/ You could also try to send a PM to the author of this thread. https://www.celiac.com/forums/topic/30345-columbus-ohio-monthly-meeting/ I'm a member of a small FB group in Athens and I am sure if I asked them someone would want to meet for food. https://www.google.com/search?client=firefox-b-1&ei=ONhUW5PwAqHdjwTN1bagCw&q=gluten+free+meetup+columbus+ohio&oq=gluten+free+meetup+columbus+ohio&gs_l=psy-ab.3...115663.122147.0.123329.    
  • Blog Entries

  • Upcoming Events