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Kind Of New To Cd

deblyn

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deblyn Newbie
deblyn
Posted

Hi folks - This will be lengthy - Please forgive be in advance - I've been googling - and I registered and I then browsed around the site. A support group is always comforting when you've been facing the unknown and a "professional" suggests this might be the answer. Today. upon referral from my GP, I went to a gastro - mainly because both of my parents had colon cancer in their early 50's and they are not yet 60 - and I am almost 42. Yep - the lovely teenage parents of the 60's. God Bless them. Mom - also suffering from MS - was stricken with colorectal cancer at 55 with 6cm applecore tumor (while livingin FL) and Dad after suffer a heart attack that "went through" began bleeding and they couldn't find the culprit so they scoped him from both directions - they found the "silent killer" - you know the on that Katie Couric's husband died from...the upper right quadrant - the size of a golf ball. He was in Alabama - and I was in GA. Their surgeries were scheduled a week a part. Both are alive today.

But there's more about me. At 13, I was diagnosed with severe scolisis - a 38 & 64 degree curve btween the base of my neck and my waist. I was cork screwing. In fact, my rib cage was trying its darndest to cut off my heart. I had Harrington Rod Surgery and surgically fused my spine together. In later years, it was necesarry to remove the rods - my muscles have atrophied and my neck has phase 4 (out of 5) natural fusion - which means I have limited mobility in my neck and next to no mobility in my spine.

About 9 or 10 years ago - I was having serious - muscle issues - more so than ever. I have had muscle and sleep issues for so many years it is hard say when they started. I typically say - I have been an insomniac for 30 years.

On the same note, I have had bowel issues just as long - I never noticed a big difference in my bowels until after childbirth though. (Those 2 precioous kids I wasn't supposed to have) Progressively - they have become more and more unstable. Sometimes 6 to 8 weeks with full blown diarrhea and then 3 months full blown constapation.

It must have been about nine years ago that my GP/FP dr. narrowed it down - yoou know the drill - eliminated everything he thought - was a possibility - my fatigue - my muscles - my bones - my lack of sleep - even my bowels (IBS) my numbness (not MS like my mom) - I was depressed - who wouldn't be! - I must have Fibromyalgia. Okay - all of you FMS patients out there _ I am not insulting you one bit - I was even bedridden - I did feel your pain and mine - but here's my thing - I have very few tender pressure points - at least not that I am aware of - my pain sensors are so dull after five surgerys that my blood pressure is usually the key that there is actually pain going on. I have fought tooth and nail on this one. I appreciate the fact that my connective muscle tissue doesn't repair itselt because I do not sleep - in fact - I was floored that my doctor gave me a FIVE month supply of ambien and said if you do not sleep you will never get well. This is the same docter who had me on soma. low dosage phenobarb and desyril. My energy has picked up and mood has improved but my joints and muscles are still in grave pain. And get this! My sed rate is the best its ever been.

A month ago I went to the doctor for the first time in three years for a variety of reasos - for not going: lack of insurance, tiired of the song and dance, tired of the guinea pig drugs (BTW on a couple of more), eetc... ad lib...but my pain and my ability to function was getting the best of me. I am a pre-k teacher, a summer camp counselor and a professional storyteller and I was told - once again - to go to bed.

So today after complaining about these symptoms to a GP/FP/Rheumie - I go to a Gastro and he says okay you MUST have a colonoscopy and I think just maybe you have celiac disease. While I am in there I'll do I a biopsy - and here's some literature. FYI - I mentioned I have no insurance - but he's a sweetheart of a dr. which is why my gp sent me there. He works outs payments

I went to lunch with my daughter and read her the info and she said "Mom! That's me and you!" Except she even showed signs as a child and I didn't.

Then we come to the DH - I have had places on my face for almost 2 years now - on back longer - and the worst spot besides my face were my upper and forearms also almost two years ago. But they went away much quicker and never reappeared. All started mostly like blisters. The face (on my cheek)itches like hades! I have tried bokoodles of stuff - I supposed to see the dermotologist (my gp's other concern) next. I copied a piece from this forum to take with me. It doesn't look blistery right now. It's dried out - I scratch and pick even in my sleep - I used to have beautiful skin. It's like there are tiny pellets under the skin - but that's not exactly the word i want - is this gluten surfacing in my skin? I have a place inside my mouth too - not far beneath the place on my cheek.

The weirdest thing is - several years ago - prabably about 7 or 8 - maybe less - I was trying more hoplistic alternatives - massae therapies - herbal supplements - and I had my eyes read. They told me then - I had a wheat/gluten allergy. You see, my eyes were blue until I was approximately 14 yrs. old. I had my first back surgery three months prior to my 14th birthday. It is said that stresses can trigger this illness.

I have to check my blood tests and compare what each doc has done and then have more blood done. My GP will fax over my most recent labs - My gastro has ordered: tTGIgA, Lipase, Gliadin IgG, IgA

Any feedback or encouraging words are welcome - in the meantime - I am going to begin implementing a gluten-free diet. THIS WILL BE HARD! My husband and I are pasta loving, bread and butter, eating - I personally will have to give up CHEESEBURGERS AND BEER! And serious hardship! How do you give up cheese? I have done so well - the past month - in fact I have lost 18 pounds - by adding much more salads, vegs, and fruit to my daily diet - pleasse help me transitition. Because, if it means, I awake, not stiff, not in pain, no loss of feeling in my hands, arms legs, finnges, heels, toes, buttocks, etc. fewer headaches, more energy and live longer, and so forth I think I can buy gluten free coffee creamer skip a cheese burger (what about bocaburgers?) No beer though, huh?

Please direct me to a celiac disease for dummies site :) and pray for me

Deonna

It's late - forgive the typos...

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Jnkmnky Collaborator
Jnkmnky
Posted

You can have dairy as long as you're not bothered by it. Some people with celiac disease experience temporary lactose intolerance, but that's your call. You can have cheese burgers. Get Kinnikinnick breads. www.kinnikinnick.com

You can have most every food you enjoyed prior to going gluten free. Some may be the gluten free version of your favorites, but I believe there's a sub for most everything. Tinkyada pastas are the best gluten free pasta on the market. They taste like normal pasta. Others are not as good as gluten full. Good luck!

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      Contact them.
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