Posted 08 March 2005 - 07:44 AM
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...
Diagnosed Celiac in Feb 2004
Posted 08 March 2005 - 08:12 AM
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
Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004
Posted 08 March 2005 - 08:13 AM
If I can be of any help let me know and good luck
Gluten-free since January 2004
Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"
"One Nation, Under God"
Feel free to email me anytime....firstname.lastname@example.org
Posted 08 March 2005 - 12:07 PM
Posted 08 March 2005 - 01:03 PM
Diagnosed Celiac in Feb 2004
Posted 08 March 2005 - 08:26 PM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 09 March 2005 - 06:49 AM
Diagnosed Celiac in Feb 2004
Posted 09 March 2005 - 09:42 AM
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!
Posted 09 March 2005 - 11:36 AM
Posted 09 March 2005 - 08:37 PM
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!
The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller
Judy- Gluten Intolerant
Posted 10 March 2005 - 03:50 AM
Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
Posted 10 March 2005 - 11:39 AM
Posted 11 March 2005 - 01:22 PM
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
Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)
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