• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help! Gluten Free - Not Working!
0

7 posts in this topic

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?

0

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

0

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!

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.

0

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

0

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.

0

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?)

0

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
      107,332
    • Total Posts
      935,533
  • Member Statistics

    • Total Members
      64,994
    • Most Online
      3,093

    Newest Member
    Daisy Charlize
    Joined
  • Popular Now

  • Topics

  • Posts

    • Started thinking the only cereal I allow in my house is Vans, they have a cinnamon one that is like a captain crunch with cinnamon, and a strawberry O type that I keep in stock for a friend that comes over sometimes and for my cousins littler girls who I end up babysitting sometimes. There was a coconut flake (corn flake knock) off I used to eat, but the company discontued it. There is a stuff called progranola from julians bakery made without grains that looks great but is a bit expensive at $9 a bag.
    • I would add your pharmacist to that that list and double check when getting a script filled that they checked to make sure it is safe. You will also need to tell any romatic partners as if they are gluten consumers they should brush their teeth before any kissing.
    • What you all are going through is normal. It took a long time for celiac to progress to the point where you were diagnosed and it takes time for the antibodies to resolve and for you to return to full health but you will. Eat as many whole foods as you can, stay away from oats and limit or delete dairy until you have healed for a while longer. Some of us will react to even gluten free oats so wait until you have been symptomless to try them out.  Sublingual B12 may help you heal a bit faster and do take a good gluten free vitamin. Be careful of the 'whole foods' vitamins as some will have barley or wheat grass in them. Eventually you will recognize when you get hit by CC, in my case I get a shift like I am falling sideways and an almost instant change in mood for the worse but it took a while to realize that was what was happening.  If you take any prescription meds do make sure that your pharmacist knows you are celiac and that they are checking all meds prescribed. If you haven't already do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good information to keep you safe. Welcome to you all and I hope you heal quickly.
    • Did you take any vitamin D supplements when that tested low? Was anything done to correct the other deficiencies you had?  Do you take a multivitamin now?  I think correcting any vitamin and mineral deficiencies should be the first line of defense.   It's the simplest way of ruling out more sinister conditions.  Vitamin deficiency diseases can be mistaken for other diseases.  For example,  a deficiency in niacin (pellagra) can be mistaken for Celiac Disease. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html Cycling Lady broke vertebra in her neck throwing up.  She had anemia, a result of iron and B12 deficiencies.   I understand how you can just blow off the importance having adequate vitamin and mineral levels.  I did.  My doctor did, too. But when a friend suggested vitamin D deficiency might be causing my severe depression,  I begged my doctor to check my vitamin D level.  He ranted he couldn't make any money prescribing vitamins.  He finally agreed, but only because my insurance would pay for it and he could prescribe synthetic D2.  My level was six.  That's severely deficient.  He didn't bother with checking for other deficiencies.  I broke a leg, osteoporosis due to calcium deficiency.  That's lame.  I developed pellagra.  That's "slightly dead."  Then there was the BeriBeri episode with bouts of tachycardia. That's "almost dead." And from complications of vitamin A deficiency, I'm legally blind.  All within three years.  Yeah, sure, vitamins aren't so important.  Just ignore them, they'll go away.  Please rethink putting nutritional deficiencies on the back burner. Hope this helps. 😸
  • Upcoming Events