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Bstein493

Coping With The Disease

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This sounds difficult. Could she post here and tell us more about what is happening?

Probably the first question is how is she doing with her gluten free diet? Has she found and removed all the hidden sources of gluten? Has she tried to eliminate milk as well?

Some have had to go to very restricted diets because the GI tract cannot handle much else until it heals somewhat.

We'd love to help, just need some more details so we can help more specifically.

Also many people here have gone through the "afraid to eat" stage. We'd be happy to give her some support.

Finally there can be other things going on besides celiac, and some people here can share their experiences with that as well.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I didn't feel well on a gluten-free diet and assumed for a long time that I was just getting glutened from some mysterious source. There may be some other foods that she is intolerant to, such as dairy and/or soy. I eliminated lactose, and felt better but still was getting sick. I had to eliminate anything with dairy in it (casein is a protein in milk many are intolerant to), and then felt better but still not 100 percent. Now I'm trying to be soy-free, but accidentally ate some the other day. Doh! It can take time and lots of trial and error to discover what are some "safe" foods.

For now, she should try eating bland foods and then gradually add in other foods. But I'd avoid dairy altogether for at least 6 months to see how she feels. It's really tough at first but gets easier in time.


"I'm not telling you it's going to be easy. I'm telling you it's going to be worth it." - Art Williams

Currently gluten-, casein-, soy- and nightshade-free.

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I feel the same way and I have made improvements but I still have a fear to eat because it just doesn't ever feel good. I also get very depressed very easily now, I found it was helpful to see a counselor to help me develop some coping mechanisms and work on the panic over eating.

I take it one day at a time, and each night when I go to sleep I just celebrate for making it through another day and when I wake up I celebrate making it through another night.


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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I feel the same way and I have made improvements but I still have a fear to eat because it just doesn't ever feel good. I also get very depressed very easily now, I found it was helpful to see a counselor to help me develop some coping mechanisms and work on the panic over eating.

I take it one day at a time, and each night when I go to sleep I just celebrate for making it through another day and when I wake up I celebrate making it through another night.

I am dealing with the depression side of it lately. Previously it was taking all my energy to just cope and find things to eat. I am lactose and gluten intolerant, and went through allergy testing last year and am allergic to corn and poultry. I thought I was allergic to beans and nuts, because they would rip through my system, but after a year of being careful with my diet, and letting my 43 year old internally abused body heal, I was able to bring nuts back in in small quantities just fine. I'm too scared to try beans as they really hurt my stomach before. I cannot have gluten or dairy in any amount, and need to carry an epipen, it has gotten so bad. Who wants to live this life??

Last night I was sitting in the living room listening to my children critique the lasagna I made for my son's (non-celiac) birthday. Then it dawned on me: I hadn't had any dinner myself. I have 3 children at home and make meals from scratch for them and for myself and completely forgot about my own dinner, I was so focused on the birthday dinner for the kids. And worse, nobody else noticed either.

I go to the store and spend so much time reading labels, and now just stick to the produce section. It seems most anything in a can or jar has a corn or gluten product in it. Now I try to go to the store and look in the produce section and think: look at all the things I CAN eat!

But it is still depressing. I spent 6 hours recipe hunting and planning for the entire holiday season so that I can eat good food this year. It is hard to enjoy your food when you can take a lick of a soybean and have your throat swell up because of an unknown wheat product in the seasoning salt. One minute you are walking along the next in the ER!

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It is very tough at times, especially in the first little while. January will be 5 year that i've had Celiac and I still get the moments where I feel like I'm going to snap.

Maybe try this with your daughter, it's something I did that helped knowing what to eat: I bought one of those Fat Little Notebooks. Found all the information possible on the internet (especially the list from Canada will a ton of different companies). I seperated each brand and for the scientific-named safe ingredients I also made an A-Z section. I nearly filled up the whole thing. If I discover something new I add it into the book. It's a huge help that if I'm going out shopping and can't remember if I could eat something or not I take the book, look it up, ahd have a clear yes-no answer.

~ Lisa ~


...Flames vs. Panthers, and Lifehouse, were best experiences OF MY LIFE!!...

...26 years old...

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R.I.P. Uncle Gus (Sept. 21, 1971 - Oct. 2, 2004) ... R.I.P. Baba (Oct. 12, 1911 - Feb. 28, 2006) ... R.I.P. Uncle Lawrence (Aug. 7, 1943 - Jan. 4, 2009)

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How old is your daughter? She sounds like she has been to hell and back! I feel bad for her and you! Although i don't have celiac, but i am trying to be gluten free to see if it will help, i had a tough time with my daughter... I can't quiter call myself depressed, but i was pretty down about (understatement ;) )and so idecided to write down everything that was going on, all my hopes and fears and how hard everything was... It was therapy for me, and it sure helped me put things in perspective! Nowaday i count my lucky stars that it happened to my oldest, sothe house naturally will be a gluten free house!! I found writing everything therapeutic, your daughter might find an outlet in drawing or something else. Good luck :)

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I am just getting diagnosed after 30+ yrs. of symptoms, including the rupture of my gallbladder in 1992 that put me at death's door from sepsis. I had been complaining about pain for 5 yrs. but was told to see a psychitrist. I now have tons of issues, all linked to celiac. I even went to Mayo where they biopsied my colon and found microscopic colitus. A colonoscopy followup last week resulted in a local GI doc suggesting I have an EGD to rule out celiac. I hope they rule it in.

Although I'd have to modify my lifestyle and follow the diet faithfully, at least I'd have SOME control over how I feel. This has been an ordeal resulting in being insulted, laughed at, gossiped about, called a hypochondriac. I've been diagnosed (misdiagnosed) with everything from IBS, crohns, hypothyroid, CFS, bipolar and anxiety disorder. Being told it was all in my head and ultimately losing my job of 30 yrs. was the final straw. My brain became too foggy to perform the technical skills I needed. Thankfully I get LT disability from my employer.

Sorry...I am really disturbed and mad about the yrs. that I've suffered. Oddly, if I have celiac I'll feel vindicated...liberated. Is that sick? Well...maybe, but at least I'll know how to keep myself from further damage and pain. Also, my daughter will have a chance to have a much healthier life than her mother had so far.

I'm glad there are forums like this one for us. I was able to learn a lot about celiac online and there are many sources for good gluten-free recipes too. I'm going to try to stay positive and get my health back. Without these things, I'd feel very scared and alone. They help a lot.

Sara

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