• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please Help - So Many Questions
0

5 posts in this topic

Hi everyone,

I'm new here and found this site after googling for more information. I have not yet been diagnosed with Coeliac disease however it's looking more and more likely that this is what I have. I'm off to the Docs in the morning with my food and symptom diary with a plan of having my bloods done.

Basically here's a little about me:

I'm 29 and from what I can recall I've probably been suffering with symptoms since I was around 18. However, this has been masked by the onset of severe endometriosis from the age of 13 - as a result of this condition i have had many laparoscopies and two years ago underwent a total hysterectomy with removal of my ovaries. During the hysterectomy the gynae noted that my bowel was attached to my abdominal wall and was in a mess, and if I had further problems I was to see a gastroenterologist - I;ve never really thought about my symptoms as being related until recently and suddenly it all makes sense and is all fitting together.

My symptoms started off really mild, irritating itchy rash on my arms, legs and scalp that was at first was diagnosed as scabies, then I was told it was eczema, then I was told it could be to do with my arthritis (I was diagnosed with a rare form of arthritis in January this year) and i have tried so many treatments all to no avail. I have always suffered with my bowels, spasming and cramping pains (truly horrible), bloating, constipation interlinked with diarrhoea. bad trapped wind and indigestion. Also suffer with headaches.

Just recently the intense itching is driving me insane, the rash is like clusters of red blisters which when scratched ooze a clear liquid, just horrible. It almost feels like I have tiny little creatures crawling all over me - at the moment my arms, shoulders, neck, scalp, back and legs are insanely itchy and I doing my best not to scratch them. i have so many scars on my arms from where I've scratched this rash in the past.

So the reason for posting is firstly what can I use to stop this itching, at least so I can get some sleep? I have not slept now for 48 hours due to this horrible itching and this in turn is making my headache all the worse.

I have been examining my diary and the one thing that stands out is whenever I eat anything containing gluten, bread, pasta, cakes, biscuits (even things I didn't think contained gluten), my symptoms worsen. So this is where I'm up to, I spoke to a pathologist I work with and he thinks it sounds like the gluten is causing it and it could be coeliac, hence why I'm off to the docs tomorrow. I have family members who've been diagnosed with coeliac so it's in the family.

I think after suffering with this horrible rash and bowel problems for 11 years that there has to be more to it, especially as nonw of the treatments are working.

What shall I expect at this stage? if it is coeliac I'm just not sure how I can cope with a gluten-free diet, I was looking at the ingredients lists on the food items in my cupboards and roughly 75% of it contains gluten, or MAY contain gluten, or was produced in a gluten containing factory etc... it's just such a daunting prospect.

I shouldn't worry so much, especially as I've not yet had the tests done, but I feel 90% sure that this is what is wrong with me. I guess I'm just preparing for the worse.

Anyway, ranted enough now, any helpful information from others in a similar situation would be really useful xx

0

Share this post


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


My gosh, you sound like a walking advertisement for celiac and Dermatitis Herpetiformis (DH)! Have you read some of the postings in the DH forum yet? There may be some threads on how people treat the itching until the rash eventually goes away after going gluten free. You should know, too, that iodine can also exacerbate DH, so you should eliminate iodized salt, seafood, and asparagus in addition to gluten. If your blood labs come out positive for celiac, you can skip the endoscopy in favor of having your itchy lesions biopsied instead....because if you have DH, you have celiac. If you have a skin biopsy done, you'll need to request that the dermatologist take a sample of skin JUST ADJACENT to the lesion and not from the lesion itself; otherwise, the test will come back negative.

From the sound of things, even if your blood tests come back negative (which happens with regularity), you might want to eat a gluten-free diet for a while to see if you start feeling better. If your rash clears up, you'll have your answer as to whether or not it is, in fact, DH and therefore celiac. As for the diet, I know that it seems difficult and complex at first, but that's only because people have become so accustomed to eating processed foods. Most people rely heavily on processed foods for the mainstay of their diet, but gluten-free eating is actually quite simple. If you eat natural foods rather than processed foods, you'll know that you're eating a gluten-free diet and don't have to worry so much--if at all--about cross-contamination. Many newly diagnosed celiacs follow a natural diet until their symptoms abate and then begin adding in gluten-free processed foods like bread, crackers, and treats. One of the best reasons for eating a natural diet at first is that your body will receive good nutrition, which is very important if the lining of your small intestine has been damaged. Also, many people react badly to either the alternate grains in gluten-free processed foods or the xanthan gum that is used to give the products a better texture. So, if you eat processed gluten-free foods, you may continue to have digestive problems and even think that perhaps you don't have a problem with gluten since you're still sick from "gluten-free" foods. Also, many celiacs cannot tolerate soy and/or oats (even the gluten-free kind), so you might eliminate them now and add them back in later to see if you have a bad reaction to either food.

I'm sure others will chime in soon with advice, but I'm glad that you've found us here at the forum. There's much to learn about celiac and DH, and this is one of the best places on the Web to receive honest, knowledgeable advice. Welcome!

1

Share this post


Link to post
Share on other sites

Welcome Fairydust! Wow, sounds like you have a lot going on... but you have taken the all important first step and started the process by making that appointment with your doctor.

Going gluten free is a process that can be as difficult or as easy as you choose to make it in a lot of respects, but the advice given by rosetapper is good - a diet of natural unprocessed foods in the beginning can make it all easier.

There is heaps of advice on these forums on the ways to make your life gluten free - and it's given by people much more knowledgable than me so I shall stop here and simply say... Welcome to the journey.

Wishing you health and happiness.

1

Share this post


Link to post
Share on other sites

Thanks so much for your replies.

I have been to see my lovely GP this morning and he can't decide if it's an intolerance to wheat or if it's coeliac disease. So I've had my bloods taken to test for both wheat allergy and coeliac antibodies - I also have an appointment with a dermatologist on the 14th July to have a skin biopsy done. He wants me to go on a gluten-free diet once I've had the tests done (regardless of whether they're negative or positive) and see how I get on, so after skin biopsy I'll change my diet.

0

Share this post


Link to post
Share on other sites

Hi! Either way it does sound like once you get your testing done you'll want to eliminate gluten. It can be daunting to learn a new way to eat, but once you do you will feel so much better that stuff is likely not to even sound good to you any more.

I've written a post about how to eliminate gluten from your home. The site linked from my profile also has more about whole-foods eating and our story, and the services for hands-on help that we offer to people in our area. All the recipes on our blog are gluten-free. There are also great threads on the forums here on this site about what's for breakfast and dinner that can help you think of other things to eat.

Our family felt like crap when we tried to replace "regular" products containing gluten with other processed foods and alternate grains. Once we stopped trying to substitute it and got down to grain-free, real food basics we all felt so much better.

0

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

  • Forum Statistics

    • Total Topics
      106,433
    • Total Posts
      930,547
  • Member Statistics

    • Total Members
      63,864
    • Most Online
      3,093

    Newest Member
    Shanna
    Joined
  • Popular Now

  • Topics

  • Posts

    • Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work.  While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered.  There are some exceptions, but those are not common.  
    • Exactly what are your allergy symptoms?  Were they IgG or IgE?  Allergy testing as a whole is not super accurate -- especially the IgG.  Were you on any H1 or H2 antihistamines for the last five days  when you were tested?   As far as celiac testing, four days without consuming gluten probably would not impact testing.  
    • I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. 

      Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way. 
    • So just to clarify  had not consumed any gluten for about 4 days before testing. I was assured by my allergist that it wouldn't affect the test. But what was alarming was that she retested my food allergies (my most recent reaction was two weeks ago) and every food allergy I have came back negative. I don't understand how that is possible. These food allergies developed when I was 20 and I am almost 24 now.
    • Thanks! You too! I have learned from this experience to take charge of my own health. It's nice at least that we can try the gluten-free treatment without a firm diagnosis or a doctor confirming the disease. I've also felt some of the gluten withdrawal symptoms, and my stomach pain ebbs and flows, but I'm determined to stick with the gluten-free diet to see what a difference it makes. Gemini, thank you! This was really validating and useful for me to hear. I've felt so confused through this process and just want some answers. If the biopsy results do come back negative, I'm going to follow your advice and do the gluten-free diet with repeat blood testing after a while. If they come back positive, well, then I'll have my answer. I'm supposed to get them back next week.
  • Upcoming Events