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Everlasting Hope

As I have been struggling with health issues for nearly 6 years, I have lost and gained hope so many different times.
My chronic states of malnutrition and starvation have taken quite a toll on my body. I suffer from chronic pancreatitis, a heart condition that leaves me with dangerously LOW blood pressure and a likeliness of fainting, my adrenal glands are insufficient, my liver damaged and my thyroid underactive. Through it all I have had several extended hospitalizations,
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depression and hope. So many doctors and non-traditionals have made me promises. However, it is the promise one makes to oneself that is most important. Mine, "Don't lose Hope!" Even during the worst of days when I would not be able to get out of bed and wanted it all to just end, I truly never lost hope! I am here to tell you that it is soooo important you hold on. Because, one day when you're not even looking and hardly paying attention, something will come to you and change your life.

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4 Responses:

 
deb

said this on
20 Apr 2010 4:12:41 AM PDT
Trish-please contact me. I have chronic pancreatitis and lived on tpn for 1.5 years. I'm eating a very limited now-but EATING.

 
Trisha McGinley
( Author)
said this on
13 May 2010 3:13:50 PM PDT
Deb,
Sorry it took me so long to respond. I didn't know you had left a comment.

 
Trisha McGinley
( Author)
said this on
13 May 2010 3:11:37 PM PDT
I struck out on TPN twice. First time = blood clot; second time = blood sugar issues; thus feeding tube!!

 
michelle

said this on
31 Jul 2010 11:01:34 PM PDT
deb-
sorry, It took so long to reply, but was sick and didn't read until now but have been to sick to reply .
wow, it sounds like me, but I am eating now-I would say that I gained weight but I just found out I have an under active thyroid - just started the meds today and go for sonogram on throat next week.
Think positive things will get better- thank god for my husband.
I started w/ Dr. Green but felt like a test tube great doctor though- now see someone at Mt. Sinai and Boston Beth Isreal They have a big celiac program.Dr. Kelly-you may want to check him or Dr. Green out.
I wish you only the best.
Michelle




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I have 2 copies of DQ9. One from each parent.

Obviously from the outside it's difficult to comment, but if I were you I'd leave allergies for now and pursue definitive celiac testing via your doctor and preferably a gastroenterologist. They're the first port of call for digestion issues. If you do wind up being celiac it's possible that other allergies or intolerances would resolve or improve in any case once you've been on the diet for awhile. That's been my experience. Ps note that wheat allergy is completely different and unrelated to celiac or non celiac gluten sensitivity.

Thank you ps, it may be better if the thread title was changed as we now have two 'overwhelmed' topics. If it were 'Bile ducts and celiac?' then it may attract more users with direct experience?

Hello and welcome Maybe? From reading others accounts there's a big variation in how quickly gluten antibodies respond to the gluten diet. I did similar to you and my doctor said that 1 week back on should be enough to show up in a test, but he didn't know what he was talking about sadly... The 2 week figure refers to the endoscopy, for blood testing 8-12 weeks on gluten is more normal. Basically if it comes back positive fine you have your answer. If its negative it may be a false negative due to your going gluten free beforehand. If you want to pursue a diagnosis then yes. Don't go off gluten again until you confirm that all testing is complete. Keep a journal noting any symptoms, that may be useful to you later. More info here: There's some good info in the site faq: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I know how you feel! Partway through my gluten challenge I knew that too results notwithstanding. Fwiw I think you've found your answer. Good luck!

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.