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Sick For Years And Trying To Figure It Out, Its Gotta Be This


29wilds

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29wilds Newbie

Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.


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ShayFL Enthusiast

Even if you dont get an official Dx, it will not hurt to try a gluten-free diet. It is healthy. And the proof would be in the eating. :)

Also consider the SCD (Specific Carbohydrate Diet) as it sounds like it fits you.

Wishing you well!

TracyB Apprentice
Ive been so sick for a couple years now and can't work, can barely take the dogs for a walk sometimes and the doctors tell me that all my testing comes back OK! Within the last 5 months my nose runs when I eat and I use to drink beer but all of a sudden can't take it any more. I put it all together and did my research and it all seems to fit. I don't get diarrea but I do have hypothyroid problems, I can't stay awake after some meals and its so bizzare that people think I'm loosing my mind. I feel like I'm being drugged when I eat. I either can't stay awake or I feel so sick its like I took poison or something. I don't know what to eat or not to eat but I'm getting a notion that if this is what it is I know what to do I think but the blood testing has came back normal for celiac spru two times in 2 years. I hear from everyone here that a lot of false negatives happen and I'm in the process of getting another upper endoscopy arranged so they can check it all out and at least make sure I don't have cancer or something because I feel like I"m dying most of the time and I can only lay here and suffer. The only thing I think I can do is make the doc take a biopsy to confirm or deny this, and then proceed with a big change in diet but I'm so sick I can't wait. I've tried some pancreatin enzymes to see if it will help and surprisingly it really did. Its the only thing so far thats helped at all with how I feel except trying not to eat bread and such. I also have a very bad burning pain in my back like its a pancreas problem and its been getting worse the last 2 months. I also have had burning pains in my legs recently along with massive headaches, my ears are ringing, and I'm so tired all time just like everyone else. I've gotten so cold while outside its like being in -20 below zero my fingers hurt like they were frozen!! I don't know who to talk to because everyone I know thinks I've lost it already since all testing comes back ok. I know theres something very wrong here and I can feel it all over my gut, my kidneys, my legs etc. Im glad I found this site because it tells me I'm not loosing it and there are people like me out there. I just hope that I can get a scope done on me to take this biopsy to get the real diagnosis. I do have an appointment with an allergist next week and from her receptionist it didn't sound like they know what I'm talking about so here we go again. I know that everyone here has had major trouble but I'm close to loosing my mind because nobody understands me so I hope someone can tell me I"m like you are and what i'm doing is the right thing. I don't really know how much longer I can hold my sanity and if I can't what should I do. I don't have any family to rely on and all the quacks I've talked to about depression only care about the money. I hope if you read this you can give me some adivice or anything to help me out, I'd really appreciate it.

I agree with ShayFL - it sounds like the doctors are doing things for you but not hitting the target yet. After the biopsy you may want to go gluten-free as you have nothing to lose. Good luck to you and I hope you find out what's going on - some of your symptoms sound like Fibromyalgia - I work with somebody who had similar to you and she couldn't get out of bed anymore and has 2 kids. She went to a Herbalist and she swears it cured her - she calls all doctors quacks now! It's just a thought - you never know...

TracyB

ShayFL - if you're reading this - my DD's name is Shae! She's just turned 3 - lovely name!

Nancym Enthusiast

Are you getting proper treatment for the hypothyroid? That sure can make you feel miserable if you don't get it treated properly.

Here's a good site to read up on that: Open Original Shared Link

But yeah, it takes an average of 11 years to get a celiac diagnosis. If you want to get on with it, just try out the diet and forget about all the doctors, see if you can't manage to make yourself better.

ShayFL Enthusiast

Shae is very pretty. :) My legal name is Sharon but my family all call me Shay.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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