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Day 1 No Gluten


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62 replies to this topic

#1 McDougall

 
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Posted 01 December 2004 - 09:43 AM

I just found out about Celiac disease this morning on google. I have been sick for about 6 years since a series of stressful events. I feel like I have poison in my body, I feel like vomiting always, my stomache hurts constantly. I have horribly painful gas. Migranes started last month. I'm depressed. I broke my femur in a minor accident a few years ago. I've become lactose intolerent, though I feel intoloerent of all food really in spite of the fact I always want to eat. I always have diarria. My whole body aches, I was an Ironman Triathlete, now I can barely get out of bed each day. Been to several doctors over the years, gave up last year and have just dealt with it. I've been pretty sure I woudn't live long because I feel worse and worse every day, doctors said Stress, IBS and allergys were at fault, but I seem allergic to everything. Chemical smells, mold, perfumes are enough to make me pass out at times. I've spent 4 hours reading about Celiac and I'd say I'm about 99% sure I found out whats wrong with me, I'm in near tears. To have just one day in life where I feel like I used to would make so happy. I'm not bothering going to the doctor with this I'm broke and uninsured. I will be going 100% glutten free. I'm vegatarian 38 male. When will I start to feel better!? I could really use a little encouragement or something. Sorry you guys had to go through this to.
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#2 lovegrov

 
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Posted 01 December 2004 - 10:21 AM

If celiac in indeed your, problem, it's hard to say exactly when you'll start feeling better. I was very sick and it took about three weeks before I could take even a short trip out by myself. It was 10 weeks before I could go back to my desk job and about 10 months before I was completely "normal" again. However, you should notice some type of improvement soon.

If you have celiac disease, some of your exhaustion could be from anemia. Do you know if you're anemic? If so, find a gluten-free iron supplement and eat lots of protein. Some people who are vegetarian and go gluten-free choose to eat some meat for at least a while (one friend of mine ate chicken and fish, but I think she's back to vegetarian now), but that's your choice.

Remember that you might have other intolerances or allergies that will never go away. But if you do have celiac disease the lactose intolerance might disappear after some months.

richard
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#3 McDougall

 
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Posted 01 December 2004 - 10:39 AM

I've been thinking maybe I should go to the doctor to get the initial biopsy, It would certianly ease my mind confirming my suspicions. Anyone know a good doctor in Pompano Beach/ Ft Lauderdale? How much would the test cost approx?
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#4 celiacfreeman

 
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Posted 01 December 2004 - 11:27 AM

Just remember that going gluten free is easy after first few months. It''s rather like
quiting smoking or going to another country and not knowing the language.
Don't eat anything processed without contacting the manfacture and watch out for glue, soap, envelopes, gum, shampoo near mouth.
HOpe you fell better soon, I feel great after 10 month gluten-free, but really notice a difference after being anemic for so long with 3 months.

ps I found a 95.00 internet skin prick blood test on line. Just do a search
I think it is online md or somthing like that.
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#5 beelzebubble

 
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Posted 01 December 2004 - 07:41 PM

hiya mcdougall,

you could try Enterolab. their tests start at around 100. i really hope this is the answer for you. i know how awful it is to feel so sick and not know what's wrong. i think we all do here. do get yourself some vitamins. i've been using the costco brand vitamins which list whether they are gluten free on the side of the container. they've been working pretty well for me.

this is going to be touch and go for you for a while. try playing with your diet to see what gluten free foods you can tolerate and what your body needs. i find that there are quite a few things that bother me now that i am gluten free-eggs, raw onions, cashews, pineapple. i also find that i crave things that i never did before. red meat has become my friend. i seem to crave it intensely from time to time now. i pay attention when my body craves something, and also when it doesn't like something. you will need to as well.

anyway, just wanted to give you some support and to say that i really hope you are feeling better soon.

bubble
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#6 tom

 
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Posted 01 December 2004 - 10:22 PM

Hi McDougall,
You nearly made me think i was reading MY story. I've never understood the perfume reaction but ugh i'd walk up 20 flights b4 riding in an elev w/ the wrong perfume.
I've been gluten-free about 11 mos and now feel 1000x better than during that last month b4 starting gluten-free. (2ton nausea, migraines, vertigo, bone pain, periods of overall stiffness as if plywood were glued to my back, vision getting blurry, stumbly gait from cerebellar ataxia, the general "celiac fog", dental enamel problems, etc)

Regardless of ANY other steps you take next, you need to stop ingesting the substance that your body treats as a poison (If it truly is celiac. It is an auto-immune disorder, after all) I felt 30x better in maybe a wk & a half.
The diet can be difficult at first because SO many things have or potentially have a gluten source. During the last yr many more products started specify these things, i.e. Modified Corn Starch or Hydrolyzed Soy Protein.
I like using this list of foods etc i CAN have. http://homepage.mac..../GFfoodlist.pdf

If you don't notice some positive changes w/in a few days or a week (ok maybe 2 or more, i really only know my exp on this), then maybe it's not celiac at all and the exercise would help to rule out one diagnosis and allow you to pursue the real solution.

I used to be active and athletic b4 the disease took over, playin hoops 3x/wk still at 35, and the combined symptoms had sadly convinced me i would never really play again. Fast-fwd 10 mos and i KNOW i'll be playing again.
If it is celiac and you go completely gluten-free, you WILL be an Ironman Triathlete again.

Good Luck
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#7 JUDI42MIL

 
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Posted 02 December 2004 - 12:59 AM

McDougall,
Wow You sound like the male version of myself. After a few days I felt somewhat better. But, it took maybe three months to be completely free of all symptoms.I have been gluten free for about 5 months, and actually can function now and have a normal amount of energy back. It is wonderful. First time in my life it seems Im not always sick.I think the days of me laying on the sofa in misery are gone.
Im vegetarian also. It was totally hard at first, because i did love my pasta, and dont seem to care for any of the gluten-free pastas out there.I think at first I was dreaming even of cakes and pies. LOL
But, that is gone and now this diet is a way of life for me.And it is really that because it gave me back my life.
Good luck to you.
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#8 Canadian Karen

 
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Posted 02 December 2004 - 02:08 AM

Hi McDougall.

I am glad that you found this forum as there are many knowledgeable and helpful people here who are very supportive.

From what I have read in your post, you certainly fit the bill of a celiac. Just make sure that you are very careful in whatever you ingest into your body. There are so many hidden sources of gluten that if you continue to ingest unknowingly, you may not see the desired benefits and think this is not your answer and give up. Make sure you check your medications, vitamins, toothpaste, shampoos, over the counter meds, etc. I made the mistake of not doing that and I was eating Gas-X like candy and found out afterwards they contained gluten!!! I am now 41 and have had severe abdominal pains and chronic diarrhea, hypothyroidism since my early 20's. It took over 15 years for the doctors to finally diagnose me correctly (bloodwork and biopsy).

I am one of those few who unfortunately was not responding to the gluten-free diet. Finally, my GI sent me to a celiac specialist, a professor here in Toronto. He did several biopsies and sent them away to be tested. The results came back as collagenous colitis, apparently 2 out of every 100,000 get this. It also explains why I continued to have permanent diarrhea, gas, etc. If you google up collagenous colitis, you might also find some similarities to your situation. Also, have they checked your thyroid?

Feel free to ask as many questions as you like, we have all been at the beginning of the gluten free road and know how confusing and frustrating it can be. I know it is hard to believe, but even though it may seem overwhelming at first, it does get easier, and it will become second nature to you...

Have a great day!
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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#9 darlindeb25

 
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Posted 02 December 2004 - 02:40 AM

<_< there's gasX again--i'm sorry if my statement was wrong mcdougall, :rolleyes: my medication list says that GasX softgels are gluten free--maybe before eating you could try Beano or another called Excuseme--many celiacs in the beginning need to take somethng like Lactaid too--------i too am allergic or intolerant of many perfumes, and just smelling them will make me ill--my eyes water continually for hours, my face burns, get a tremendous headache and at the onset i sometimes have trouble breathing regular, not like asthma, but close--i had to give up one of my favorite scents for just that reason--------feel better :D deb
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Deb
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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!

#10 celiac3270

 
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Posted 02 December 2004 - 04:12 AM

If you don't notice some positive changes w/in a few days or a week (ok maybe 2 or more, i really only know my exp on this), then maybe it's not celiac at all and the exercise would help to rule out one diagnosis and allow you to pursue the real solution.


I don't think 2 weeks is long enough to rule out celiac....I definitely have it --postiive bloodand biopsy, but I'm still getting sick 8 months in. I'd probably get a blood test or enterolab or an endoscopy or something to make sure, since it's a commitment to do this for 8 months if you don't know if it's even the problem. Remember that for blood/endo. tests, you should be eating gluten, so that it would show up...otherwise they might test you as negative.
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#11 McDougall

 
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Posted 02 December 2004 - 07:07 AM

day 2 no gluten.
Thanks for all the encouragment! It may very well be in my head but I feel better already. I feel like I didn't drink my quart of poison yesterday. The more I read about this disease the more I'm convinced I have it, everything makes sense, finally. Was just reading about others with the cold spells "rynauds" I may have this also, I often turn on my oven and stand in front of it while open to warm up, this in South Florida during the summer, I guess if I'd given this any thought I would have researched it, I just thought I didn't like the cold. It's funny the "you sound just like me" answers I got , I felt that way a few dozen times reading the forums also. I am so excited right now, I feel like I might have a second shot at life. I'm not even a little bothered by the fact I can't eat/drink gluten anymore, a very small price to pay if I can get better. The beer will be tough, I will miss that dearly, but thank God for Rum!
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#12 tom

 
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Posted 02 December 2004 - 09:50 AM

celiac3270 ? Did you not have any positive changes in any symptom w/in the 1st couple wks of starting gluten-free ? (and ftr, i was not trying to diagnose anything. My point was to start gluten-free immed, THEN think about which tests when etc.)



Hi again McD - glad to see you feel better already.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#13 YankeeDB

 
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Posted 02 December 2004 - 01:54 PM

McDougall, welcome. Your post struck a chord with many of us as you can see! Everyone's experience can be a bit different and it DOES take time to heal, so don't get discouraged if you still have bad days.

Also, I encourage everyone with celiac disease to consider other food sensitivities. Milk, yeast, eggs, soy, and corn are among the very common problem foods. You might try a strict diet of fruts, veggies, meat, and fish for a while just to see how that goes and consider various types of testing (enterolab and/or york labs) when you can afford it.

In my own experience, my bowel symptoms went away in just THREE DAYS. But my energy level fluctuates depending how well I avoid my other problem foods. (gluten-free for 11 months now). I have osteoporosis now being treated with Actonel.

Best wishes to you!
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#14 tammy

 
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Posted 02 December 2004 - 03:33 PM

Encouragement is plentiful here! It is hard to say how long it would take you to feel well consistently. But with your age, and level of physical discipline perhaps you might recover sooner than you think. Each day is a tremendous opportunity for your body to heal. But remember that you should assist your body not only by eating no gluten but plenty of rest, exercise when you feel up to it and pure water.

gluten-free,Casein, Soy, Sugar, Corn limited. Surprisingly, I am not allergic to yeast. Diagnosis by Enterolab: Gluten Sensitive/Casein Sensitive since December 2002!

:D
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#15 nailehead

 
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Posted 02 December 2004 - 04:06 PM

Hang in there McDougall!

I am new to this too! I was diagnosed only about 2 1/2 months ago, and already feel ALOT better. I have had a few "slip-ups" or just plain didnt know that a food item was gluten-free, and WHAM...SICK again.

Everyone here can relate to your problems, symptoms, and "story"...it seems to be going around.

I had a pretty traumatic car accident about 7 years ago that i think triggered my celiac disease. But not certain. But when i couldnt figure out why i started feeling bad ( all the symptoms) the doctors told me it was severe IBS and said sorry, "Deal with it"!
But after 5 years of being misdiagnosed, losing 50 lbs, all my energy, and mentally loosing my will to care or live, and ready to give up...my new Doc finally got smart, and did a simple blood test!...POSITIVE for Celiac Disease.

I was grateful at first to "finally know" why i had been feeling the way I do/did and WHAT i finally had, but was also SOOOO mad that they jackass HMO Doctors blew me off for so long while i was in constant pain and turmoil with my body. :angry: :angry: :angry:

I too USED to surf all the time, surf competitively well, snowboard, mountain bike, and was just generally fit and active. So i know how mentally scarring it can be to feel so weak and fatigued and helpless, and not know why!

Hang in there, and DO IT!
I am still new to this, but am already feeling alot better, getting my energy back,starting to feel better mentally, and started surfing again, and exercising and weight lifting.

...And yes..."Thank God for the Rum"! ;)

This site has already helped me alot and given me alot of support and knowledge that i needed, so "look over" this whole site!

And I want to thank everybody for thier comments, help and support here!

Thank YOU! you might have saved my life!

Nailehead
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