• 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.

Prednisone As Treatment?
0

32 posts in this topic

Recommended Posts

pturse    1

Lib

Thank you for your response. I guess everyone is different in terms of reacting to certain drugs. If I could handle a small does such as 5mg then perhaps I my be interested in talking more with my doctor about it. I never like taking drugs. But I am seeking some relief. First I plan to try the scdiet . . . see what happens and then when I have to go back to my GI in about 1.5 months we'll talk.

I appreciate your honesty and response.

pturse

Share this post


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


pturse    1

Hey everyone, thought I would give an up date. I have really been feeling awful lately for no apparent reason. I know I have not had any gluten intake and yet the cramping & "D" has become out of control some days. I actually had to stay home from work one day because of it and that has never happened. Before going gluten-free I never really had cramping problems just "D" and bloating. Lately, the cramping is terrible and the distenstion and bloating are way out of control.

My doctor said according to my last blood work, my Celiac is out of control. We may do a biopsy (it has been over a year since my last) to see if my villi is even responding at all to the diet because he said that I may be one of those few that the gluten-free diet just does not work. In which case, the next step is steriod like Prednizone. He is against going that far as am I.

So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet? I am sticking with for the time being and waiting until I get a biopsy which will probably be in January but that is what is running through my head. I do not want to take steriods and have to deal with those side affects. The side affects of Celiac are fine enough right now. I honestly feel like I am getting worse and feeling worse compared to when I wasn't gluten-free. Some days are good and some days are bad but lately it seems like the bad are out weighing the good.

Share this post


Link to post
Share on other sites
lovegrov    148

I can't keep track of what everybody's looked for so I'll just ask -- have you considered other intolerances and have you checked for bacterial overgrowth?

richard

Share this post


Link to post
Share on other sites
pturse    1

Yes. I have checked for bacterial growth. There was none. As for other intolerances, I am lactose intolerant and already avoid dairy. What foods seem to bother me the most are vegetables. All vegetables. I do not eat meat so my options are limited.

Share this post


Link to post
Share on other sites

First off, you sound so much like me.....

I was in your shoes not too long ago, thinking for sure that I had refractory celiac disease, as my system was just not responding to the gluten-free diet. Even when I was gluten-free, lactose free, sugar free, caffeine free, the diarrhea just continued to be uncontrollable.... It has literally been years since I have had a solid b.m....

My GI sent me to a celiac specialist here in Toronto. He did a colonoscopy and they found collagenous colitis. It is quite rare, so most GI's don't even consider it. Only 2 out of 100,000 people get it apparently. If they are doing another colonscopy on you, make sure you ask your GI to take several biopsies to test for collagenous colitis, which has to be identified by a special pathologist under the microscope. Collagenous colitis does not show up while doing a regular colonscopy as it can only be viewed through a microscope.

I have started the first treatment, and I am 4 weeks into the 8 week treatment. Unfortunately, there is absolutely no change. So it looks like the next step: steriods..... I go back to see him the beginning of January.

Good Luck!

Karen

Share this post


Link to post
Share on other sites
FreyaUSA    0
So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet?

I think that, especially in your case, remaining on a gluten-free diet is more than necessary. By eating gluten, wont you be doing more damage to your already damaged intestines? And, since you do not heal, you would be doing irrepairable damage.

Btw, what is the SCDiet?

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
      107,891
    • Total Posts
      938,513
  • Member Statistics

    • Total Members
      65,802
    • Most Online
      3,093

    Newest Member
    Mary 4605
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am so sorry that you are sick.  I think you have to decide if you want to get back on a gluten free diet and get tested or remain gluten free and seriously eat as if you had celiac disease or NCGI.  That means following celiac cross contamination protocol.  Like not sharing toasters (unless you use toaster bags), condiments  (unless squeeze bottles), etc.  NO dining out until you are seeing significant improvement.   Each time you dine out it is like playing Russian Roulette.  Go when you have mastered the diet and can afford to take a hit.   Here is the deal.  Celiacs all react differently.  If they get "glutened" it can generate symptoms swiftly or it can take a while for those antibodies to ramp up and you will not feel the effects for a day or so.  It can take weeks, months or years for antibodies to stop attacking your body.  A few gluten exposures, antibodies ramp up, you feel awful, start to recover and then you take another hit from gluten.  It can be a vicious cycle.  Many celiacs take a long time to recover, but the learning curve to the diet is steep.  I think you realize that now.  I won't get into developing other concurrent AI issues after repeated glutenings.   Your doctor does not sound celiac-savvy.  Not that all GIs need to be experts, but they should keep up on research and follow protocol as recommended by the GI Association.  Consider a new GI. Can you do this diet without a diagnosis?  Yes.  While I was formally diagnosed four years ago, my hubby went gluten free 16 years ago per the poor advice of two medical doctors.  He refuses to do a challenge now because we know that gluten makes him sick.  So, he is just as careful as I am.   Consider getting another family member tested who may have celiac symptoms.  This is a genetic related disease.   The pill camera can catch celiac disease, but not always because villi are microscopic.  I imagine it mostly catches severe damage that affects the actual structure of the small intestine.   At least you might have ruled out Crohn's.  The GI might have missed areas if damaged.  The small intestine is a very long tube and if stretched out larger than a tennis court!  Get all copies of your test results from your doctor.  You need to keep advocating and having those records in your possession is priceless.  Take care.  
    • I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat  gluten and I never have problems.   
    • No, my kitchen is NOT Celiac safe/friendly. Although I do maintain a gluten free diet and use only gluten free products in my cooking/backing, there is high risk for cross contamination with toaster use, other appliances, butters, sauces, etc. Same goes for the rarer occasion that I'll dine out - I eat gluten free & only from a gluten free menu, but I don't only eat at places with Celiac friendly kitchens/prep space.   From what I can remember, I'd like to say I have been woken up with issues just a few times though, and not anything significant. I won't dispute the probability I have IBS, however, I think there is more going on, too.     Thank you for your kind words & well wishes.
    • I run into many parents who are in quite a quandary about instituting a gluten-free diet for their child. A typical scenario is that one of the parents is gluten intolerant and is highly suspicious that their child is as well. Due to the child being 'relatively healthy' the non-gluten intolerant spouse suggests that the child be able to 'live a little' and enjoy the cake and pizza that is so prevalent during children's parties and sporting events. View the full article
    • I am so sorry you have been suffering so much for so long. Yes you do need to eating gluten for celiac related testing. There is a lot we have to do to be safe. While gluten free have you been using things like a seperate toaster, dedicated condiments, butters,jams etc? have you been baking with wheat flour for others? What is your diet typically like? I ask because your doctor is woefully ignorant of the diagnosis process for celiac so he may also not have told you what you need to do to be safe.  The Newbie 101 thread at the top of the Coping section has a lot of info. I hope you get some answers soon. One more thing. Are you being woken up at night with D? That is a good sign that you don't have IBS. IBS D hits when folks are awake.
  • Upcoming Events