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Day 1 No Gluten
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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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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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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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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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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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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.com/sholland/celiac/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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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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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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<_< 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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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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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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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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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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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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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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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!

"I have osteoporosis now being treated with Actonel."

I had alot of problems with my broken femur healing,it took over a year and was almost a non-union, the doctor said I had osteoporosis in my knee at the time (5 years ago). I was never prescribed meds for it except iron supplements. Right now as I feel better by the minute I wasn't considering going to a doctor anymore, but should I for the osteoporosis? I will look up Actonel, my bones ache pretty bad. You are all giving me the encouragment I need right now, I haven't had any hope in my life the last 6 years and now I do. So many of your words ring true. I got my cure I think I really do. 51 hours gluten-free.

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I have osteoporosis now being treated with Actonel.

Best wishes to you!

Yankee, Does the Actonel hurt your stomach? I was put on Fosamax and it hurt my stomach so much that I quit it. I know I need something but I still have so many problems that I dread starting the Fosamax again. I've seen the Actonel advertised and wondered about it. Thanks for any help. granny

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Before i started having the bone pain, i really didn't think of bone as HAVING the right nerves. Mine went away kinda slower than the other worst symptoms did, once i went 100% gluten-free. But it did go away for the most part.

I remember fondly the 1st time i went 8 hrs w/out thinking "can i take more advil yet". I'd spent too many days waiting for the self-imposed 4hrs-betw-advils to expire.

Right now it's probably been 10 hrs since i took 2 of them and i actually used to be on the equivalent of SIXTEEN advils a day. W/out it i'd get too stiff to move much. I'd change where and when i crossed a street to account for the inability to turn my head in a normal traffic-checking manner.

I'd guess my bone pain was 90% better in 2 mos, then slower rate of improvement.

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My 3rd day, defiantely feeling better. Alot of the feeling better is the knowledge I'm not putting poison in me anymore but things are clearly quieting down in my gut. I am sticking to very few things so far only rice, black beans, chicken eggs and a couple rum and cokes. I just had the eggs and not sure they are settling great I may cut them out also. I was thinking about the amount of pasta I used to eat, you have no idea. I used to eat 5000-7000 calories a day and most of it complex carbos like pasta and bread, lots of cereal ect...I have expiermented with my diet for years trying to find out what made me sick and never for a second considered bread/pasta, I doubt I've gone more than a handful of days in my adulthood without eating a large amount of gluten so I guess I never noticed it changed me because I was never without (oops I'm rambling here). I really need to find some protien besides beans and meat.

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Hi McDougall,

Do you like nuts? Nuts are an excellent source of protein. The only problem with nuts is some celiacs have difficulty digesting them.

I'm glad things have improved a bit more for you today!

I know what you mean about your Rum & Coke. See, my favourite drink used to be a Bloody Caesar, with vodka, clamato juice, worchstesire sauce and tabasco sauce, and topped with celery salt. (It's a Canadian thing......) Then I found out that Clamato juice contained gluten. Believe me, I think I mourned for a month! After a hard week at work, I surely enjoyed my Saturday BBQ topped off with a Caesar...... Now all I drink is white wine....

Have a great day!

Karen

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Hi McDougall, I have read all the entries so far on your first message. Just like allot of the others I will say it too.. Boy do you sound just I did before I was diagnosed with Celiac! I had lost 35lbs, was severely anemic, Had to get Z-shots of Iron because my system would not tolerate iron pills of any kind. I took a long time to feel a little better, but just getting rid of the pain and cramping and gas was a big relief at first. I too think you should get tested only to find out for sure as who would want to give up all the food and ajust your diet soooo much if it is not the cure.... which it sounds like it will be for you....I had a biopsy done, but I was tested in 1996 and the BloodTest was not around yet.... Oh and by the way add to Rum & Coke, Margarita's with Silver Tequila, Potatoe Based Vodka, Chopin is the Best, Cosmopolitans, Martini's, BloodyMary's... heehee, are we having fun yet? :D But don't drink alcohol if your stomach is upset.. Anyway I am very happy for you that you have found hope, I very much know where you are coming from... Take Care and let us know how you are doing.... Nancy

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McDougall--do you like cottage cheese at all--it is a good source of protein and peanut butter--peanut butter has been a staple for me--i put it on quaker caramel corn cakes or quaker cracker jack corn cakes--just make sure you buy original not butter toffee--the butter toffee have barley in them---i like cottage cheese with applesauce stirred in or pineapple--i have stirred tuna into cottage cheese--i am not much of a meat eater--the only beef i eat is hamburger--i eat very white pork, chicken breast, and cod or halibut--and of course i eat cheese too---you're doing great :D deb----i might add--i love the updates you send us

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86 hours gluten-free. You guys are great, you're really helping. Peanut Butter and rice cakes are #1 on my list of things I need now. The best thing so far is the doubling over pain is all gone, I had just gotten used to having to curl up in a ball in pain once a day or so and that ain't right, all gone. Also no more runs, none. Still pretty gassy, very foggy and sore, that hint of migrane that was lately always waiting to pounce is gone. Still get the cold spells My acid in my belly is worse a bit, I switched anacids and had some hard cider though so I shoudn't complain:-) I'm a bit of a emotional wreck but in a good way, I'm happy. I know alot of my problems will take awhile to clear but I am on my way to getting better I am certian. I have a very clear feeling of not putting poison in my body anymore. I am going to be on a mission to help other poor bastards like myself, It seems very wrong that this disease isn't commonly known about. Thanks for listening to my rambling :rolleyes:

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:lol: wonderful---i think you are doing great and it doesnt sound like your expectations are so high that you will be disappointed--thats great--i miss bread so much--sandwiches were my staple-- <_< i tried tapioca bread and it bothered me--the rice bread, i couldnt chew--i <_< threw it out for the birds and it rained for 5 days--i could see the bread was still there, so i checked it out--after 5 days of rain it was still as hard as a rock--dont want that in my tummy :angry:--so, for now i go without bread--i do buy soft taco shells and melt cheese on them--only buy the corn shells though ;) --not too bad-----deb
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Something else I just noticed, it may sound small but it isn't to me. I've haven't heard of others with this problem. Starting about 2-3 years ago brushing my teeth became a nightmare where I felt like gagging the entire time, having to stop reguraly and try again, brushing the toungue was even harder, a real pain in the butt, and every day without fail it was misery, The problem is all gone After realizing this I went and brushed again for a few minutes to make sure. This gets better and better.

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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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