• 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.

Sooo Frustrated!
0

13 posts in this topic

Hello!

I was diagnosed with Celiac in February of 2004 (with a positive blood test and endoscopy). I had all the symptoms and suffered many consequences of celiac....upset/bloated stomach, weight loss, fatigue, malnutrition, weak bones, etc etc. I have followed a strict gluten-free diet since my diagnosis. I call or email every company before eating any unknown food item. I read up on these forums daily and also have bought many books on Celiac Disease. Honestly, I though I was following this diet as well as possible (including using gluten-free make-up, haircare and hygiene products...even my boyfriend won't kiss me on the lips unless he brushes his teeth first!). I went for a yearly follow-up blood test two weeks ago and the tests came back positive for gluten. My doctor has scheduled me for another endoscopy to look at my intestines and mentioned that there are a few people who do not get better from Celiac (called refractory sprue??). In this case, he said I might have to go on some medication that suppresses the immune system but will stop your body from destroying the intestine as it does so when gluten is present in the body.

I cried for an hour last night after I got these depressing results. I just do not know what else I can do...I try so hard to follow this diet. Not to mention I am on Fossomax for weak bones and obviously this will not get better if I still have gluten present in my body. The strange thing is that I do feel somewhat better (although I still have an upset stomach from time to time and still feel a lot of fatigue). I have also started to gain weight (I was under 100 lbs while I was feeling my worst with celiac)...now I am up to about 106lbs....

I just wanted to vent to everyone and also to hear from anyone who is facing the same situation. Is there anyone out there who did not get better from a gluten-free diet and had to start taking special medications? ANy advice from my fellow celiacs that can help lift my spirits and or guide me in some direction??

thanks so much..

I love this site and all the insight from the daily postings...

Megan

0

Share this post


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


Refractory celiac disease is what your doctor is talking about and it is VERY rare. Don't get discouraged just yet.

It seems like you do a very good job of keeping gluten out of your system. However, if their is still gluten in your system after a year check the follwing things.

- Do you have a separate toaster, peanut butter, spices, butter, margerine ect?

- Do you eat out often? and are you 100% sure that your food is gluten free and has no cross-contamination when you eat out.

- Use separate stir fry pans, woks, baking trays or any cooking utensil that may hold gluten in the cracks (wear and tear on cooking utensils could contain gluten).

- Use a separate deep frier.

- When you cook at home wipe down counters with soap and water that may have gluten.

- Check ingedients for any product that may come in contact with your mouth (sunscreen, shampoo, conditioner, face wash, soap, toothpaste, lotion ect).

- When you call companies ask if the product may have cross contamination

0

Share this post


Link to post
Share on other sites

For people who do not respond or respond very little there is IV therapy. I highly recommend this it give nutrients directly to your bloodstream to make sure you are getting what you need. Also, liquid vitamins, probiotics, enzymes, and anything sublingual will also help. I have responded very well to the gluten-free diet and also use gluten-free products as well to be safe. It does sound like you have had some progress like with weight gain and so forth but I understand your frustration on still having tested positive. I was also below 100 when I was at my worst and kept losing weight and then I gained it back. The good thing is you are gaining weight back so there is one positive thing coming from it. How do you feel now compared to before?? Are you 100% sure everything you use and eat are gluten-free? No crumbs or anything? You need to take a look at everything including lipsticks and other cosmetics, lotions, shampoos etc. When people don't respond fully to the diet it means the intestines had too much damage and were not able to heal themselves but this is VERY RARE. Most people do respond to the diet. Again though I would look into IV therapy(which 3 doctors I saw recommended when I first started the diet to help get a boost) I have heard that is a really good thing especially for those who don't respond but it still is good for even those who do respond.

If I can be of any help let me know and good luck :D

0

Share this post


Link to post
Share on other sites

It is very unlikely that you have refractory sprue. Doctors will often throw around that term when your antibodies aren't going down, but it's so rare. Usually you're consuming some hidden gluten and that's throwing it off....go through everything: toothpastes, foods, possible sources of contamination...maybe go back to just fruits, veggies, potatoes, etc...thinks you know are gluten-free and build from there

0

Share this post


Link to post
Share on other sites

thanks for your posts! I have been making myself insane today, looking up info on refractury celiac. I concluded that I have intestinal cancer and cried my eyes out for an hour! (my dad passed away this summer from cancer and that subject is just way too raw for me right now). I am thinking maybe I should just really stick to veggies, fruits, plain meats made at home....until I get myself better...

Megan

0

Share this post


Link to post
Share on other sites
Ads by Google:


If you are eating processed foods, that may be part of the problem. There was a study awhile back that showed that ... what was it? at least a quarter, maybe more... of foods that had no gluten ingredients - or were labeled gluten-free - had detectable levels of contamination. I think your idea of going "whole, simple" foods for a while is a good one! I hope you start feeling better.

0

Share this post


Link to post
Share on other sites

I do eat a lot of those Genisoy Soy Chips and Trader Joe brand soy chips. Supposedly, both of these brands are gluten-free. Has anyone had a problem with these?

0

Share this post


Link to post
Share on other sites

My dietician, who specializes in celiac disease, told me to beware of Trader Joe's, because they sometimes claim foods are gluten-free when they aren't. Trader Joe's also states that they do not look into any cross-contamination possibilities, so you should be aware of that.

As for your antibodies still being present, man does that sound familiar! I'm right with you on that one. It took over a year for mine to drop, and I, too, spent so much time crying and being frustrated and afraid. I am super strict with this diet and didn't know what more I could do. I handled it by once again going through my cabinets and re-calling all the products I ate on a regular basis, and wouldn't you know it, the Heinz organic ketchup I ate at least 3 times a week had gluten in it. The customer service rep. I had spoken to when I'd first started eating it had mistakenly told me it was gluten-free, when in fact it never was! So there you go, a little mistake like that and you're glutenized. I cut that out, along with a few other foods, and a few months later my blood was "clean." Since then I have had a spike here and there in my antibodies (who knows where it comes from half the time) but overall the antibodies did come down eventually. Like I said, though, the main hard work of healing took OVER a year.

I'm gluten-free for about 17 or 18 months now, and still not totally symptom free. That's not as unusual as one might think, so please don't get as discouraged as I was. I'm still irritated from time to time about how strict I am and the fact I'm still not 100%, but don't assume you're sick due to refractory sprue or some other horrible illness, because chances are it's not true. The most likely solution is the simplest one: you are getting a trace of gluten somewhere, or you have some colitis going on, or something of that nature. But it probably isn't anything to worry about, so hang in there!

Gillian

0

Share this post


Link to post
Share on other sites

Yes--I've heard the same thing about Trader Joe not being reliably gluten-free. They used to claim that some product was gluten-free and someone called them about it since it contained "barley" on the label. They then realized the mistake, but it tells you something if they claim something is gluten-free and write barley on the label. I've had a similar experience with Atkins--almost ate a supposedly gluten-free cookies and cream bar, marveling that it had such a name and was still gluten-free. Luckily, I read the label even after seeing it on their list. Of course, it had "barley malt" in it. I now refuse to eat anything by Atkins--they obviously don't understand celiac.

0

Share this post


Link to post
Share on other sites

Gillian,

Thank you, thank you, thank you!

I have been eating Heinz Organic Ketchup. I thought all Heinz Ketchcups were

gluten-free. No wonder I was feeling so bad. If you hadn't shared that info with us

then I may have been using it for years not knowing it. I am going over all my

foods and double checking them. I can never thank you enough!

0

Share this post


Link to post
Share on other sites

Megan---are you taking any kind of medication that may contain gluten--even something as simple as an aspirin that contains gluten can be a problem--medicine does not follow the same guidelines as foods do?????????? Deb

0

Share this post


Link to post
Share on other sites

Wow, Judy, I can't believe that was one of the culprits in your food cabinet, too! What a coincidence. I'm so happy I was of some help to you! :)

0

Share this post


Link to post
Share on other sites

Megan ,I would be very interested how you get on as my husband is in a similar situation.Been gluten-free(so very strict!) for 7 months.He's unable to put any weight on and is about 120 pounds,however his bloods have always been negative.Docs want to try steriods next I think.We're waiting the results of second biopsy,but not terribly optimistic-as he's still so ill.

I can really sympathise with you,as it's so disheartening to really stick to the diet and see no improvement.Hope you feel better soon-Nikki

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
      106,454
    • Total Posts
      930,640
  • Member Statistics

    • Total Members
      63,880
    • Most Online
      3,093

    Newest Member
    Celiac in Japan
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes the first has wheat gluten in the ingredients, the second via the wheat flour. Here in the UK manufacturers HAVE to highlight gluten sources. Check the ingredients and if WHEAT, BARLEY, or RYE are mentioned *usually highlighted, italicised or underlined, then you will know there's gluten. Most of iceland's processed foods will probably be gluten filled to be honest. Any breadcrumbed or battered foods for instance.  Ps, you and me both have another disease, the british one of apologising  You don't need to, you're very welcome here and all of your questions are valid and understandable. It's going to get better  
    • Hi, I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them? http://groceries.iceland.co.uk/iceland-32-breaded-chicken-nuggets-448g/p/52275   Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. http://groceries.iceland.co.uk/iceland-10-breaded-chicken-burgers-550g/p/52276 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. Thank you for all your help so far,
    • JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc.  throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant.  I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,
    • Hi Allie and welcome First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations!   A lot of good advice has been brought together in this thread:  Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment.  You may want to avoid dairy as well for now and think about reintroducing it later. This site has been really helpful to me and others. I hope you find it just as useful. Best of luck!   ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete!   PPS( )  Inasmuch as your post can convey emotion, your's seemed positive  Stay that way! At times the diet can be a bit isolating and some friends and family may struggle to understand. I'm sure it will be difficult at times making good choices and staying vigilant when everyone around you doesn't have to think twice. Stick with it, your health is paramount and it will be worthwhile. In time your good friends will get it and those that don't aren't worth worrying about. There are great foods you can eat and if not, learn to cook them yourself  
    • Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!
  • Upcoming Events