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Sooo Frustrated!
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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

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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

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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

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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

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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

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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.

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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?

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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

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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.

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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!

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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

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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! :)

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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

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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