• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
karat514

Please Shed Some Insight On This Blood Test

Rate this topic

Recommended Posts

Hello all: Could you please shed some insight on this blood test.  I have the results in hand and was told things are in normal range.  It reads as follows:

 

 

Test                                                                         

 

Tissue Transglutaminase IGA

>          Transglutaminase AB (IGA)                           Flag Reference

 

                             <1  (my result)                               <4 U/ML        | CPF

 

(that is exactly how it reads.  No more no less.)

 

 

Other than being told this was normal, I have no idea if this a pretty good indicator that I DO NOT have Celiac. 

 

Thank you in advance from someone who is frustrated 

 

 

Share this post


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


I share your frustration that they ran only this one test :(   They did not even run the total serum IgA which would tell us if you make normal quantities of IgA and that therefore IgA testing can be relied upon.  Doctors are in love with the tTG but it can be negative in people who will test positive on other celiac blood tests like the DGP (a newer test, and more sensitive and more specific for the development of celiac, i.e., shows results earlier and damage less likely to be caused by something else if positive).  The EMA is also a very specific test for celiac but they don't normally run this unless the tTG is positive.  But your tTG IgA will not be positive if you do not produce normal quantities of IgA - so it's Catch 22.  Is there any chance of talking whoever ordered your test to also order:

 

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

  • Upvote 1

Share this post


Link to post
Share on other sites

I share your frustration that they ran only this one test :(   They did not even run the total serum IgA which would tell us if you make normal quantities of IgA and that therefore IgA testing can be relied upon.  Doctors are in love with the tTG but it can be negative in people who will test positive on other celiac blood tests like the DGP (a newer test, and more sensitive and more specific for the development of celiac, i.e., shows results earlier and damage less likely to be caused by something else if positive).  The EMA is also a very specific test for celiac but they don't normally run this unless the tTG is positive.  But your tTG IgA will not be positive if you do not produce normal quantities of IgA - so it's Catch 22.  Is there any chance of talking whoever ordered your test to also order:

 

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Yes, I follow up on March 12 because on Feb. 18 I had a colonoscopy.  The reason being, Dr. leaning toward IBS but wanted to rule out other things before putting me on meds.  Said that I am at an age where things could go wrong (I'm 45).  Again, just to be on safe side. 

 

After colonoscopy when Dr was speaking with my husband, he told my hubby that test went well however, he did remove a polyp and took a few biopsies but didn't expect them to be a problem.  Therefore, he handed my husband a script for Levsin for me to take. 

 

I have not started meds.  I really do not want to take it if i can improve things with my diet.  With that being said, I have been wheat/gluten free for only one week now and compared to the way I was feeling, I feel amazing!  Still not 100% but feel very healthy like. 

 

A brief history- I was told I cried the first 2 years of my life because I had colic (was born in 67).  Always very sickly and skinny.  My mom said it wasn't until I had my appendix out (via emergency surgery at the age of 8) that I started to "fill out".  Therefore, she thought I must have been born with a bad appendix.

 

In 2003 I had my gallbladder removed so, all my bowel issues over the years, I blamed it on not having a GB.  Said "issues" mostly happens right after eating, sometimes, I haven't even finished eating and I'd be running to the bathroom.  Also, first thing in the morning as soon as my feet hit the floor i'd be running to the bathroom as well. 

 

Not to mention the bloating and gas so bad I looked pregnant and it hurt to touch as well.  And the exhaustion so bad that I would ask myself "am I really that lazy?"  I forced myself to get through days.  I'd go to bed tired and I'd wake up tired no matter how much I slept. 

 

Anyway, back to the blood test.  I'm no expert, but just from what I posted above...I'm NOT impressed! 

 

Love this site!   And have a great day!

K

Edited by karat514

Share this post


Link to post
Share on other sites

Welcome to the board. That you feel much better after being on the diet a week is a good sign that you are someone who needs to be gluten free. Now on to the bad news.... If you are going to have any more testing done for celiac you need to get back on gluten. Otherwise you risk a false negative. Too bad your GI didn't do an endo at the same time he did the other scope. That is what you need for celiac diagnosis. If when you add gluten back in your body reacts badly you do have the answer no matter what the tests results.

Share this post


Link to post
Share on other sites

IBS is a symptom not a diagnosis, aka we have no idea what is going on with your gut.

Share this post


Link to post
Share on other sites
Ads by Google:


IBS is a symptom not a diagnosis, aka we have no idea what is going on with your gut.

Agreed.  Hence the reason why I haven't been so quick to take the meds. 

Share this post


Link to post
Share on other sites

Welcome to the board. That you feel much better after being on the diet a week is a good sign that you are someone who needs to be gluten free. Now on to the bad news.... If you are going to have any more testing done for celiac you need to get back on gluten. Otherwise you risk a false negative. Too bad your GI didn't do an endo at the same time he did the other scope. That is what you need for celiac diagnosis. If when you add gluten back in your body reacts badly you do have the answer no matter what the tests results.

Thank you.  I figured I'd just try gluten free on my own and until my follow up on the 12th.  I have to admit I feel so much better that I am not looking forward to going back to gluten even short term, but I will if I must.  Both tests done at once would have been ideal but, it is what it is. 

Share this post


Link to post
Share on other sites

If you have been gluten free for only one week, it is not too late to get back on gluten right away.  That way you will not have to do a full challenge.  If you wait until the 12th, you will probably have to eat it for an additional six weeks, which will not seem very short term to you after having experienced the benefits of being gluten free (we always feel worse when we resume eating it :( )  As a matter of fact, depending on the relationship you have with the doctor, you can even call and ask him to mail you a blood slip for the other necessary tests or just stop by his office and pick it up and have the blood drawn right now; but do get back on gluten before it's too late. :unsure:    You can tell the doctor how much better you are feeling already!

Share this post


Link to post
Share on other sites

If you have been gluten free for only one week, it is not too late to get back on gluten right away.  That way you will not have to do a full challenge.  If you wait until the 12th, you will probably have to eat it for an additional six weeks, which will not seem very short term to you after having experienced the benefits of being gluten free (we always feel worse when we resume eating it :( )  As a matter of fact, depending on the relationship you have with the doctor, you can even call and ask him to mail you a blood slip for the other necessary tests or just stop by his office and pick it up and have the blood drawn right now; but do get back on gluten before it's too late. :unsure:    You can tell the doctor how much better you are feeling already!

Oh thank you but that is not what I wanted to hear.  Lol.  I just assumed feeling better after only one week was not enough time to know for sure before I reintroduce gluten.  But if this is a gluten thing then six weeks eating gluten sounds worse.   Do I have to go crazy with the gluten or can I just have small amounts here and there? I guessing if this is a gluten issue even small amounts will make me feel like crap again. 

 

Thanks,

K

Edited by karat514

Share this post


Link to post
Share on other sites

I would eat quite a bit the first day to make up for the days you haven't been eating it, but then just the equivalent of a slice or two of bread, or a few crackers or whatever.  No need to kill yourself :D   You just have to give the antibody factory enough raw material to work with :lol:   And yes, I'm sorry, it probably will make you feel like crap - or even worse.

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

0

  • Who's Online   18 Members, 1 Anonymous, 406 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

  • Forum Statistics

    • Total Topics
      109,734
    • Total Posts
      947,372
  • Member Statistics

    • Total Members
      72,206
    • Most Online
      3,093

    Newest Member
    Grace Tolerton
    Joined
  • Popular Now

  • Topics

  • Posts

    • Very true, I think I have taken steps to think that a upset stomach is normal , many times I would play soccer with discomfort or go on a date being extremely bloated but I thought it's normal for people with IBS! I have been eating a little bit of gluten for the past couple days. I feel a lot more tired than a few days ago and one day I slept 12 hours!  When I went gluten free for 8 days , I felt like my energy level went up, I felt better and even my sex drive sky rocketed. Not sure if that 8 days really made a difference or it's just psychological or both. I read a lot online about this condition and the more I read the scarier it gets. I guess my social life will never be the same. I can't travel freely anymore :-( It seems this a very serious condition, but what I don't understand is that most people with celiac are never diagnosed so how do they live their entire life not knowing with such severe consequences Right now I really look forward to going back to a gluten free diet, my endoscopy is on Friday.
    • I’ve been having diarrhea and headaches, daily for 18 days now. I have had many of the common celiac symptoms for most of my life, as well.  I asked the doc to check for celiac. He ordered the tTG-IgA and nothing else. It finally came back and my results for 3.48 (which according to the <20 range for my test, is obviously a very strong negative). I’ve read that ttg could give a false negative of you are IgA deficient.  I don’t want to annoy the doc and make him think I’m the queen of the internet, lol, but should I push for a full celiac panel and remind him that the ttg alone could give a false negative?  Did any of you get a negative tTG-IgA, but actually still have celiac? Also, I should mention on my blood work, my hemoglobin is fine and not showing anemia (not sure if that’s what causes the immunoglobulin A deficiency or not.. I don’t know enough about that deficiency.)
    • I don't think that's harsh at all. There are real concerns about cross contamination in the kitchens with these "gluten-free pizzas". Even Domino's has a warning.  While the Gluten Free Crust is certified to be free of gluten, the pizzas made with the Gluten Free Crust use the same ingredients and utensils as all of our other pizzas. Read the upper left big red box which says: Domino's DOES NOT recommend this pizza for customers with celiac disease. https://www.dominos.com/en/pages/content/customer-service/glutenfreecrust.jsp
    • Hello, I can tell you a couple of things, the first of which is based on personal experience. I sometimes have an unsightly rough patch on my nose that I have been struggling with for a number of years. If I bring up the topic at the dermatologist, they tend to put me on either an anti-fungal or a steroid cream, both of which after a while I stop using. The steroid of course does "work." My skin clears up. And now with the anti-fungal, this was more interesting. It seems that whatever it was on my nose did kind of clear up, but then a patch of...something (I don't know what) would crop up just outside of the area where I had put the anti-fungal cream. That made me laugh. Next, I assumed it might have been caused by not washing my hair enough (I have dandruff and used Head & Shoulders) so I'd experiment and it would (sort of) seem that my nose was not as bad on the day after I washed my hair. But the most dramatic improvement by far has occurred since I switched from Head & Shoulders to a bar shampoo (which I do in order to get organic ingredients but more important to cut down on plastic waste). Rough patch is simply gone with no trace of it. The older I get the more I am tending to use personal care products that try very hard to be organic. Second, I read the adverse effects of dapsone, and see that exfoliative dermatitis is one of them, as is photosensitivity. Have you ruled out adverse effects? Plumbago
    • I would say to both of you to nix the iodine for 2 weeks. Look up low iodine diet on thyca.org. The other thing is - and you 're not going to like this - BUT NOTHING labeled gluten free. Eat fresh fruits & veggies, & meat & dried beans you sort, wash & cook yourselves & later, the dairy can be added back in. NO EATING OUT!!!!! Nothing from a bag!!!!! You want a snack? Apple slices, carrots, banana, fruits or even some leftover meat. If you continue to have problems after about 2 weeks of that, then you may need to have the Dapsone dose upped. You guys need to know that dh is ultra sensitive to the tiniest amount of gluten. One reason I am not a fan of people taking Dapsone is because it does control the rash & people are lulled into a false sense of security. You may be eating stuff you are sensitive to but you don't know it b/c the Dapsone is masking the reaction.  MOST of us with dh can't eat like celiacs who do not have dh; at least not in the beginning & maybe for years & years. Depends on the individual but enough of us have learned the hard way that we have to go to the maximum extreme to get relief.
  • Blog Entries

  • Upcoming Events