• 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   09/30/2015

      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 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
PunkyBean

Help! Gluten Free - Not Working!

Rate this topic

Recommended Posts

I was diagnose with Celiac (by biopsy) in December and went gluten free on the first of the year. When I was diagnosed I was having stomach pains - that's it. After going gluten free the pains seemed to stop and all was good. Then I ate at PF Changs and got glutened. :( major DH. About five days later it happened again. The DH has not gone away - it has been a couple of weeks. I've since eliminated dairy too. It just seems to be non-stop. Every morning... and everyhing I'm eating is for sure gluten free. Doubtful that there are any cross issues either (I'm beyond paranoid after PF Changs.)

Some people have told me it's just the gluten leaving my system and it takes a long time, but how could that be? Does anyone else have these issues?

Share this post


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


As I understand it, it can take months and sometimes years for DH to go away in some people and that's with careful limitation/avoidance of iodine and certain kinds of fish

Share this post


Link to post
Share on other sites

My daughter get's DH from the smallest trace amounts of gluten. Until just recently (she has been gluten free for a little over a year), whenever she would have a breakout from CC, it would continue to get worse for 1-2 weeks and would not start to clear up for at least six weeks. I think it would stick around for up to three months at first.

We started the Specific Carbohydrate Diet in Sept. and it seems that since that time when she does have a reaction it has been lasting less and less time. I just realized that over that last couple of weeks she has broken out twice, but it has been much less severe and started to get better after just a few days and one time was completely cleared up within a week.

I don't know if that helps any, but it might take more time for your body to heal and it might not hurt to look into the SCD diet or Gaps diet if you don't see better recovery after a while. - I know that we didn't start to recover very well until doing the SCD.

Hope you can find some good help soon!

  • Upvote 1

Share this post


Link to post
Share on other sites

My daughter get's DH from the smallest trace amounts of gluten. Until just recently (she has been gluten free for a little over a year), whenever she would have a breakout from CC, it would continue to get worse for 1-2 weeks and would not start to clear up for at least six weeks. I think it would stick around for up to three months at first.

We started the Specific Carbohydrate Diet in Sept. and it seems that since that time when she does have a reaction it has been lasting less and less time. I just realized that over that last couple of weeks she has broken out twice, but it has been much less severe and started to get better after just a few days and one time was completely cleared up within a week.

I don't know if that helps any, but it might take more time for your body to heal and it might not hurt to look into the SCD diet or Gaps diet if you don't see better recovery after a while. - I know that we didn't start to recover very well until doing the SCD.

Hope you can find some good help soon!

Hello, I don't have DH, my celiac symptoms were all neurological with some stomach pains. I went for two months on just plain food; rice, chicen, meat, vegetables. Then I felt I was doing great and started eating processed food which was marked as gluten free and I've been really ill again. I think just try really plain, completely unprocessed food and see how that works. It takes longer to prepare meals of course, and a wee bit of a bind when one works away from home, but I'm sure that's the way to sort out the system. Hope you feel good soon.

Share this post


Link to post
Share on other sites

Just something for you all to think about or look into if you're still having trouble on the gluten-free diet. Try googling Elaine Gotschall, Dr. Haas, and/or the Specific Carbohydrate Diet. Original research showed the celiac problem to be caused by certain sugars/carbs. This thinking has since been replaced by the modern thinking that it's just a gluten-intolerance problem. But why is it that people on a gluten-free diet never actually "heal" totally? Some (I don't know what percent) feel symptom free most of the time and maybe only have an occasional flare-up. But a biopsy will still show damaged intestinal walls. Others continue to be plagued with ongoing issues.

My husband is celiac and has been on a gluten-free diet for 15 years, but he still suffers from IBS and has other celiac-disease health problems. My daughter has been on a strict gluten-free diet for a little over 2 years. She had an initial good response, but soon had all her symptoms back and she has continued to go downhill. She is a wreck physically. We finally found a doctor last month who was able to diagnose the problem: refractory celiac disease, where the gluten-free "fails". Interesting!

Both are now on the Specific Carbohydrate Diet. We have JUST STARTED and I'm looking for anyone else out there who may have some experience and could maybe answer some questions for me. Thanks!

Melati

Share this post


Link to post
Share on other sites
Ads by Google:


Just something for you all to think about or look into if you're still having trouble on the gluten-free diet. Try googling Elaine Gotschall, Dr. Haas, and/or the Specific Carbohydrate Diet. Original research showed the celiac problem to be caused by certain sugars/carbs. This thinking has since been replaced by the modern thinking that it's just a gluten-intolerance problem. But why is it that people on a gluten-free diet never actually "heal" totally? Some (I don't know what percent) feel symptom free most of the time and maybe only have an occasional flare-up. But a biopsy will still show damaged intestinal walls. Others continue to be plagued with ongoing issues.

My husband is celiac and has been on a gluten-free diet for 15 years, but he still suffers from IBS and has other celiac-disease health problems. My daughter has been on a strict gluten-free diet for a little over 2 years. She had an initial good response, but soon had all her symptoms back and she has continued to go downhill. She is a wreck physically. We finally found a doctor last month who was able to diagnose the problem: refractory celiac disease, where the gluten-free "fails". Interesting!

Both are now on the Specific Carbohydrate Diet. We have JUST STARTED and I'm looking for anyone else out there who may have some experience and could maybe answer some questions for me. Thanks!

Melati

Hi, Melati!

I wouldn't consider myself an expert by any means, but my family and i have been doing the SCD for about five months now - almost six. I would love to answer any questions that I can, and I would also love to be in touch with another Celiac family that is on the SCD - there aren't very many. I find that most people on the SCD are treating other intestinal illnesses like chrones or colitis, and I think that it ends up being a little different for us Celiacs.

Share this post


Link to post
Share on other sites

Hi, Melati!

I wouldn't consider myself an expert by any means, but my family and i have been doing the SCD for about five months now - almost six. I would love to answer any questions that I can, and I would also love to be in touch with another Celiac family that is on the SCD - there aren't very many. I find that most people on the SCD are treating other intestinal illnesses like chrones or colitis, and I think that it ends up being a little different for us Celiacs.

Hello and thank you! After posting on this link I started a new thread called Specific Carbohydrate Diet, and I've got a few questions there. Maybe you can reply to me there. It's great to meet someone else who is doing this and is finding it somewhat helpful. I get so frustrated with all the conflicting opinions - makes it hard to know what to believe. But we have just invested in a yogurt maker and other things for this diet, and want to give it a fair trial. Bottom line, we just want to see our daughter get well.

Thanks! You can always email me too. (I think. How does that work on here?)

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

  • Forum Statistics

    • Total Topics
      108,932
    • Total Posts
      943,579
  • Member Statistics

    • Total Members
      67,231
    • Most Online
      3,093

    Newest Member
    5schillings@optimum.net
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi there I have this exact same thing.. however I don’t have celiac that I know of.. I found this when google searching for what the heck is wrong with my face.  I was wondering if you ever found out.. or if it just went away. Thanks
    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • If Small was going to get rid of anything in a takeaway meal, it would be the bread with all its dreaded gluten. However, many scientists and nutritionists argue gluten is not a problem for people who do not have celiac disease or who are not "gluten-sensitive". Massey University senior lecturer in food ... View the full article
    • Holy cow! You people are all angels! I have been suffering unbearably with these hot, itchy, and painful bumps on my scalp for a year now. Two doctors had no idea what it was, so I was sent to see a "dermatologist." To my utter shock, he told me I WAS DIRTY! HE TOLD ME TO WASH MY HAIR EVERY DAY with a shampoo called Nizoral, that it would take the itch away. He also prescribed a Vaseline based salve with a steroid in it. Guess what? It did nothing nor did the shampoo, and the more I washed my hair, the worse it gets. It's like torture, and I just can't stop scratching holes into my scalp. Then they scab over, then itch again. I was almost ready to shave my head, until I found this forum. I knew nothing about celiac disease, sensitivity to gluten... I knew nothing. Just so happened that my daughter found a paper talking about celiac during her visit to her GI yesterday. She brought it home for me, and demanded that I read it!  WHAM- a light come on, and I said to her... That IS what I have. I am going to my GP tomorrow to demand that I be tested for ciliac. I am rather terrified, as I am already a type 1 diabetic and have been on insulin for 52 years! I was blaming my diabetes the whole time. I have had a lower left leg amputation, and the last thing I need is to start getting this ungodly rash on my stump!!! Thank you everyone for all of the useful information you have provided in this blog. Maybe I'm not going to die after all! 😉
  • Upcoming Events