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Sick For 3 Years And Now I Know Why....


amethystium-sky

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amethystium-sky Rookie

hello all im new to this and i just wanted to ask a few questions.

well here is my story thus far….

im 22 years of age, suffering for the debilitating affects of constant nausea/ loss of appetite as well as severe weight loss ( 5 4” from 115lbs to 82lbs, im a pretty small person to start with and i cant afford to lose any more). i loosing weight and had an inability to gain any weight while eating a balanced diet with a (calorie count of 3,000 a day) i have had to struggle with unimaginable vertigo/dizziness on a daily basis for the past 3 years. other minor symptoms such as persistent acne,( i have tried every over the counter and prescription medication available nothing has helped even the slightest ). chronic constipation off and on, fatigue/ weakness and or not feeling rested when i have 12 or more hours of sleep. i have been to 3 different doctors, two for gastrointestinal and two for ear nose and throat problems. have had every blood test, malisorbition (sp?), anima, stool fat, all my organs tested, protein and vitamin deficiencies, ultra sound, as well as ct and mri's, heart related (ekg's) and endoscopes. all tests came back clear with the exception of being diagnosed with IBS.. which is just and excuse because doctors really don’t know whats causing so many people needless pain..

it wasnt until this last month that my symptoms became progressively worse, i had a 10 day ordeal of severe vertigo and nausea. so much so to the point where i was spending all day sleeping on the bathroom floor for fear that i was always going to get sick and couldn’t make it in time. i was admitted to the ER and after 6 hours they discharged me with a 4 page list of tests. all they could come up with was that i was dehydrated and to follow up with my doctor.

recently as of march 20 th i was tested the second time for allergies ( lactose, gluten intolerance/celiac) and finally i got a diagnosis of celiac.

i Have started a gluten-free diet, lots of veggies, fruit, rice and gluten-free food to have snacks to help me gain some weight.. its been about a week and im not feeling any better…not worse.. but about the same as i always do.. realistically how long dose it take to begin feeling better and what could i do to gain some more weight?.. can strange symptoms like dizziness and acne be caused by celiac disease?.. has anyone had these symptoms and did they go away with staying true to a gluten-free food diet?

i also had a elevated glucose & cortisol level i have a doctor appointment tomorrow morning and im really worried what the glucose and cortisol have to do with or if they are the reason im sick as well.. diabetes is in my family but im tested all the time and its always “normal”

any information or ideas are of great help and much appreciated!!

-kerissa


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TCA Contributor

I have the acne and dizzyness. Remember it can take months to see the difference. It took me a few months. I hope you feel better soon.

nettiebeads Apprentice

There are many variable factors in each case of celiac. You didn't state how long you had had the symptoms. Everybody heals at different rates. I'm glad you're not getting worse at least. You need to not only look out for wheat, oats, rye and barley and malt in foods, you also have to look for the offending glutens in other products - meds and toiletries. Some people have had to have a course of steroids to help start the healing. Another good thing for celiacs is L-glutamine (no, not gluten in it directly) just be sure to get a gluten free bottle of it. Also, cut out diary for awhile, if you haven't already. Some people have had to go back to basics - no prepared anything from the center aisles of the grocery store, just the perimeter - meats veggies and fruits. Hope this helps and keep coming back with any questions - we're a very caring bunch and know how hard and complicating this disease can be on every day life.

Annette

Clark Bent as Stupor-Man Contributor

at this point, I'd recommend reading as much info as possible and consulting with any resource you have (doctor who diagnosed you, friends/family if any are gluten-free, the internet, etc.)... you should get new pots and pans and certain other kitchen items, new toaster, etc.. you should also check your personal products, most importantly those that come into contact with your hands or face... if you take any medications, they might also contain gluten... I'd also recommend stopping as many meds as possible which could also be doing damage internally in an already susceptible system... but you may need certain meds so that's different for each person..

as for not feeling better after a week... I don't think most people feel that much better immediately though some do... for many people it takes months or longer to significantly recover and there are ups and downs on the way... but stick with it 100 % (cheating even once can set you back significantly), and you'll notice improvements at some point..

it's also possible you have other food allergies.. but it's difficult at first to figure them out because you might just be reacting to a food temporarily while you heal internally... you could look into elimination diets or delayed allergy food testing at some point if you feel you are still reacting to certain foods, but I wouldn't go right into one without first consulting with a nutritionist because of how much weight you've lost.. I would also try to find a good nutritionist or dietician by you who can help you with your diet for now..

as for the glucose level being high, I had the same situation recently which also struck me as odd... I was diagnosed hypoglycemic a couple years ago during college and apparently I had impaired glucose tolerance (a pre-diabetic condition) as well from my glucose tolerance test... but I never had a high fasting blood sugar until recently.. it came up at 105 when I had my gluten blood test done... I had my fasting glucose tested again a month later and it was only 88.. I realized that I had eaten more carbs than usual (though still not many for the average person) the day before in order to get gluten back in my system for the blood test (not the best way to approach that in hindsight :rolleyes: )... I'm still looking into blood sugar issues in addition to food allergies myself... an endocrinologist might be able to help you with that although you said you were seeing a doctor about the glucose level..

hope you start feeling better soon...

Charlie

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      Hi @RMJ,   Thank you for you input. I really appreciate all view points on this, more than you know.  Maybe I’ve done too much research. One thing I read would point to yes and then along comes all these variables that convinces me that my levels were high because of having a virus.  I don’t like bread or pasta that much but seriously love baked goods.  I’m scared to give those up “for no reason”  I’m also scared to be doing damage to my body.    I’m stuck in a situation where I’m scared and confused either way.    It’s hard for people with silent celiac because you don’t “feel” like you are doing the right thing.    I did see some advertisements on here about Giliad X? Is that a supplement for gluten and is insulin for diabetes? 
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      Thank you @trents!    I have been going back and forth on some gluten free some days and some days not trying to see if there is any reaction to how I feel.    As much as I don’t want to I think given the blood test not being 100%. It’s fair to say an EGD is necessary.  I do think before I go through with that I would run another TTG IGA if my doctor would approve that. If levels are the same, I have no choice. 😔    In the mean time I’m going to enjoy gluten. The biggest problem I have is the thought of eating 4-6 slices of bread per day. That’s crazy! There has to be something comparable. Possibly an “average” of about that per day? Is there any lists of foods out there that are trade offs? (4 slices is = 1 donut) 
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