Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

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:

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




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
      104,142
    • Total Posts
      919,559
  • Topics

  • Posts

    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,175
    • Most Online
      1,763

    Newest Member
    GMO Poisoned
    Joined