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What Is Wrong With Me

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#1 rube2112

 
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Posted 16 March 2013 - 07:24 PM

Hi, I'm new to this board.  I know your not doctors etc but I just want to hear what my symptoms sound like to you.  I'm desperate.  

Joint pain, serious gut problems, had c-diff, serious eye inflammation, strange rashes on a few of my fingers, some neuropathy in a few different places, positive rheumatoid factor test and positive anti-ccp test.  tingling in hands and forearms especially when I wake up.  weight gain especially in abdominal area, serious fatigue, strange mask like feeling across my forehead.....chronic sinus infection that won't go away no matter what.   .there are probably other symptoms but you get the idea...

 

I've had celiac antibody test and it was neg, plus I've had gut biopsy done and it was also negative......please help.....Thanks....Robb


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#2 guest134

 
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Posted 17 March 2013 - 12:09 AM

"Anti-CCP is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints. Low levels of this antibody are less significant. In the past, doctors relied on another antibody, the rheumatoid factor (RF) to help confirm a diagnosis."

You had two positive tests that were very specific for Rheumatoid arthritis, it looks to me like that is your issue. Has your doctor diagnosed you with R.A? Here are the symptoms:


  • Stiffness: The joint does not move as well as it once did. Its range of motion (the extent to which the appendage of the joint, such as the arm, leg, or finger, can move in different directions) may be reduced. Typically, stiffness is most noticeable in the morning and improves later in the day.
  • Inflammation: Redness, tenderness, and warmth are the hallmarks of inflammation.
  • Swelling: The area around the affected joint is swollen and puffy.
  • Nodules: These are hard bumps that appear on or near the joint. They often are found near the elbows. They are most noticeable on the part of the joint that juts out when the joint is flexed.
  • Pain: Pain in rheumatoid arthritis has several sources. Pain can come from inflammation or swelling of the joint and surrounding tissues or from working the joint too hard. The intensity of the pain varies among individuals

    If I were to guess I would say that you have both Hashimoto's thyroiditis (autoimmune hypothyroid) and Rheumatoid arthritis. You already have your diagnostic tests for RA so start with that treatment and get the following done for your thyroid:
    Thyroid peroxidase ab
    Thyroglobulin ab
    Free T4 
    Free T3
    TSH

    I had a friends father who had both hashimoto's and R.A and your symptoms are dead on with what he had. Luckily, both can be managed with medication and some lifestyle adjustments. With a negative Celiac blood panel and biopsy I think it is pretty safe to write off that being the issue, do you know which tests they ran? It would be helpful if you could post up all results of your autoimmune tests.

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#3 Juliebove

 
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Posted 17 March 2013 - 04:25 AM

Agree that it could be thyroid.  Also could be diabetes.


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#4 rube2112

 
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Posted 17 March 2013 - 05:53 AM

Hi there, thank you so much for the replies.  My rheumatoid factor I was told was only doubled which my doctor said wasn't that bad.  I don't have access yet to the anti ccp test....here are my thyroid labs...

 

Reverse T3, Serum070105 27.7 13.5-34.2 ng/dL
**Please note reference interval change**

TSH+T4F+T3Free
Date Collected: 10/25/2012 12:45:00 PM

Test Description Result Range Units
TSH004264 2.64 0.450-4.500 uIU/mL
Triiodothyronine,Free,Serum010389 2.4 2.0-4.4 pg/mL
T4,Free(Direct)019745 1.02 0.82-1.77 ng/dL

 

I'm not going to survive if this doesn't get figured out soon because it has taken away every reason for living that I had.  

I am being treated for the reheumatoid arthritis with 20 mg methotrexate per week and it has done absolutely nothing.  I will not let them give me more or give me a biological because of the c-diff.  My new doctore has put me on a diet of only cod, salmon, and leafy greens.  I've been on the diet for 5 days and I can't report anything positive yet.  I can't do anything for myself really because of the mailaise fatigue etc.....

Thanks, Robb

 

 

 

"Anti-CCP is a very useful test to order during the diagnostic evaluation of a person who may have rheumatoid arthritis. If present in such a patient at a moderate to high level, it not only confirms the diagnosis but also may indicate that the patient is at increased risk for damage to the joints. Low levels of this antibody are less significant. In the past, doctors relied on another antibody, the rheumatoid factor (RF) to help confirm a diagnosis."

You had two positive tests that were very specific for Rheumatoid arthritis, it looks to me like that is your issue. Has your doctor diagnosed you with R.A? Here are the symptoms:


  • Stiffness: The joint does not move as well as it once did. Its range of motion (the extent to which the appendage of the joint, such as the arm, leg, or finger, can move in different directions) may be reduced. Typically, stiffness is most noticeable in the morning and improves later in the day.
  • Inflammation: Redness, tenderness, and warmth are the hallmarks of inflammation.
  • Swelling: The area around the affected joint is swollen and puffy.
  • Nodules: These are hard bumps that appear on or near the joint. They often are found near the elbows. They are most noticeable on the part of the joint that juts out when the joint is flexed.
  • Pain: Pain in rheumatoid arthritis has several sources. Pain can come from inflammation or swelling of the joint and surrounding tissues or from working the joint too hard. The intensity of the pain varies among individuals

    If I were to guess I would say that you have both Hashimoto's thyroiditis (autoimmune hypothyroid) and Rheumatoid arthritis. You already have your diagnostic tests for RA so start with that treatment and get the following done for your thyroid:
    Thyroid peroxidase ab
    Thyroglobulin ab
    Free T4 
    Free T3
    TSH

    I had a friends father who had both hashimoto's and R.A and your symptoms are dead on with what he had. Luckily, both can be managed with medication and some lifestyle adjustments. With a negative Celiac blood panel and biopsy I think it is pretty safe to write off that being the issue, do you know which tests they ran? It would be helpful if you could post up all results of your autoimmune tests.

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#5 guest134

 
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Posted 17 March 2013 - 07:30 AM

Robb, I am really sorry to hear how poorly you feel, hopefully you can get to the bottom of it soon.

The thing with the gluten free diet is that it does not require a prescription.... You are free to do it on your own, so why not give it a try? Desperate times call for desperate measures and you can very well have NCGI. That being said I think it is important to not put too much weight into gluten intolerance as there are many other things that need to be evaluated. 

For your free levels of thyroid, your T4 feeds your T3 basically and your T3 is what your body uses. So the lack of proper binding of T3 from T4 is usually what will cause the symptoms. Now the thing is that they are just beginning to discover that having elevated thyroid antibodies (Thyroid peroxidase, Thyroglobulin) will also cause the symptoms. You have to remember, when an autoimmune disease begins it is not just one big attack and then the organ/gland is left completely useless, it takes time. So for all we know, without having the antibodies tested, is that you are in fact in the beginning stages of Hashimoto's.

Another red flag for me is that even though your thyroid levels are in the "normal" range they are getting pretty close to the bottom of the range, especially the T3. For those reasons I would recommend insisting on the antibody tests that I just listed. There is a poster on this forum that got a diagnosis when her blood tests were positive and if I recall correctly her thyroid hormones were still normal but in the very low normal. Her username is nvsmom, you should contact her to get some info as from what I read she has responded well to treatment. Ideally, you want your T4 to be around 50 percent of the range while your T3 is the upper 66-80 percent. Most patients feel best at these levels.

Also, have you had the ANA and other associated antibodies looked at? Your symptoms also ring the lupus bell to me.


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#6 ravenwoodglass

 
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Posted 17 March 2013 - 07:46 AM

Don't have much time so this will be brief. You have nothing to lose by giving the diet a good strict try for a couple of months once all celiac testing is over. You may have more than one thing going on but the diet may give you some relief. Going gluten free won't effect testing for other problems.


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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 rube2112

 
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Posted 17 March 2013 - 07:47 AM

Thanks for the reply........if I get a lupus diagnosis I will kill myself..........plain and simple.

I have tested negative for thyroid antibodies but I'm not sure which test it was.  I can't get any of my doctors to do anything for me or to run more tests and since I've been working on this for months, I just don't have to energy anymore to call new doctors, wait a month for open appointments, etc.  I'm just not sure how to proceed anymore....Robb

 

 

Robb, I am really sorry to hear how poorly you feel, hopefully you can get to the bottom of it soon.

The thing with the gluten free diet is that it does not require a prescription.... You are free to do it on your own, so why not give it a try? Desperate times call for desperate measures and you can very well have NCGI. That being said I think it is important to not put too much weight into gluten intolerance as there are many other things that need to be evaluated. 

For your free levels of thyroid, your T4 feeds your T3 basically and your T3 is what your body uses. So the lack of proper binding of T3 from T4 is usually what will cause the symptoms. Now the thing is that they are just beginning to discover that having elevated thyroid antibodies (Thyroid peroxidase, Thyroglobulin) will also cause the symptoms. You have to remember, when an autoimmune disease begins it is not just one big attack and then the organ/gland is left completely useless, it takes time. So for all we know, without having the antibodies tested, is that you are in fact in the beginning stages of Hashimoto's.

Another red flag for me is that even though your thyroid levels are in the "normal" range they are getting pretty close to the bottom of the range, especially the T3. For those reasons I would recommend insisting on the antibody tests that I just listed. There is a poster on this forum that got a diagnosis when her blood tests were positive and if I recall correctly her thyroid hormones were still normal but in the very low normal. Her username is nvsmom, you should contact her to get some info as from what I read she has responded well to treatment. Ideally, you want your T4 to be around 50 percent of the range while your T3 is the upper 66-80 percent. Most patients feel best at these levels.

Also, have you had the ANA and other associated antibodies looked at? Your symptoms also ring the lupus bell to me.


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#8 GottaSki

 
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Posted 17 March 2013 - 10:53 AM

Good Morning Robb-

 

You are right - we are not doctors - but personally I have way too much experience with Lupus and other AIs that often run together with Celiac Disease.

 

My daughter was diagnosed with Lupus at 13...she'll be turning 30 next month and is living a very full life...has it been easy? No.  

 

Here is the interesting thing -- none of my kids tested positive on the celiac antibody tests -- with the exception of my daughter's DGP - IgG at 25 years of age.  ALL of them and my grandkids have had some or complete improvement in all our miscellaneous autoimmune symptoms since we removed gluten four years ago.  Regardless of your celiac antibody tests...with your symptoms remove gluten for at least three months - six is better while you keep working with your doctors to diagnose possible other AIs.

 

All that said -- I would be remiss if I did not address the statement about killing yourself.  Many of us understand how frustrating and hopeless getting a diagnosis can far to often be -- but you can get better.  If you are seriously feeling like you can not go on - call 

 

Eight hundred - 273 - TALK

 

or visit their website of that of another agency -- there are people trained to help.

 

http://www.suicidepr...onlifeline.org/

 

Take care and let us know if we can help walk you through your upcoming doctor appointments - preparing for these appts can really help empower you.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 rube2112

 
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Posted 17 March 2013 - 11:01 AM

Hi again, None of my doctors are even trying to run more tests.  I have begged and its just not going to happen.  They wouldn't believe that I had a gut infection and it took me driving 2 hours to a distant hospital and begging them to do a stool sample which confirmed c-diff.  Even then, after first round of abx, they wouldn't retest me.  Drove two hours again and confirmed c-diff again.  My rheumatologist keeps trying to get me to take nsaids and they set off my gerd so bad that I can't function.  If I persue any more treatment like biologicals etc, I will die of c-diff.  Robb

 

 

 

 

Good Morning Robb-

 

You are right - we are not doctors - but personally I have way too much experience with Lupus and other AIs that often run together with Celiac Disease.

 

My daughter was diagnosed with Lupus at 13...she'll be turning 30 next month and is living a very full life...has it been easy? No.  

 

Here is the interesting thing -- none of my kids tested positive on the celiac antibody tests -- with the exception of my daughter's DGP - IgG at 25 years of age.  ALL of them and my grandkids have had some or complete improvement in all our miscellaneous autoimmune symptoms since we removed gluten four years ago.  Regardless of your celiac antibody tests...with your symptoms remove gluten for at least three months - six is better while you keep working with your doctors to diagnose possible other AIs.

 

All that said -- I would be remiss if I did not address the statement about killing yourself.  Many of us understand how frustrating and hopeless getting a diagnosis can far to often be -- but you can get better.  If you are seriously feeling like you can not go on - call 

 

Eight hundred - 273 - TALK

 

or visit their website of that of another agency -- there are people trained to help.

 

http://www.suicidepr...onlifeline.org/

 

Take care and let us know if we can help walk you through your upcoming doctor appointments - preparing for these appts can really help empower you.


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#10 Tiredsean

 
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Posted 17 March 2013 - 11:11 AM

May I ask Robb how long you've been struggling? Are you male/female and age? AI,s can vary from types that affect certain gender and age.Please feel free to keep posting but also please don't jump to conclusions.I know it's tuff with today's medical system to get help and rapid help, but don't do anything drastic .Lots of AI,s have treatements,remission and depending on the cause sometimes a cure
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#11 rube2112

 
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Posted 17 March 2013 - 11:15 AM

I'm male 48 in Ohio.  The problem started 15 years ago.  First symptom, increased hunger, sinus infection that wouldn't go away then 6 months later, right shoulder was attacked, then left shoulder, then wrists. Robb

 

 

 

 

May I ask Robb how long you've been struggling? Are you male/female and age? AI,s can vary from types that affect certain gender and age.Please feel free to keep posting but also please don't jump to conclusions.I know it's tuff with today's medical system to get help and rapid help, but don't do anything drastic .Lots of AI,s have treatements,remission and depending on the cause sometimes a cure


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#12 guest134

 
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Posted 17 March 2013 - 02:31 PM

Ok, well Lupus at 48 is rather uncommon. Even if you did have Lupus, why would you end your life? Would you really want to succumb to this? You have to be stronger than that! My grandfathers brother had Lupus, guess what age he lived to? 92, no I am not kidding you NINETY-TWO. My grandfather who was perfectly healthy lived until 88. Lupus is known to often go into long periods of remission in which some people can even reach nearly a decade of symptom resolution. Would you rather not have it? Of course, everyone on this forum would like to be able to eat gluten without it destroying their intestines but you learn to cope and you become stronger because of it.

You sound like you are in awful shape right now, so it can only get better from here. If you get diagnosed with lupus, well guess what? You get treatment, and it will help push it into remission. At this point, it is only upwards for symptoms so don't give up and don't even think about ending your life because of it! There are a lot of people here that have multiple autoimmune diseases, they are all doing fine. 

Go look through my old threads about my panic about Celiac when I was first faced with it's probable reality, I look back on those posts and laugh now. I also had a childhood friend that was diagnosed with Lupus very early and he is as healthy as anyone else, in fact at this point I would say he is in much better shape than me and most of my friends. The anxiety and depression that come with being newly diagnosed are temporary, you are in a TEMPORARY state of mind right now so it is very important to not act out in any harsh way because of it. 


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#13 rube2112

 
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Posted 17 March 2013 - 04:45 PM

Thanks, I just wish my stupid doctors would listen to me when I try to explain how bad I feel.  The methotrexate has done absolutely nothing.  In fact, I think it has made me worse.  I'm due to take it tomorrow and I think I'm going to stop it.  Its dangerous and isn't helping anyway.  Robb

Ok, well Lupus at 48 is rather uncommon. Even if you did have Lupus, why would you end your life? Would you really want to succumb to this? You have to be stronger than that! My grandfathers brother had Lupus, guess what age he lived to? 92, no I am not kidding you NINETY-TWO. My grandfather who was perfectly healthy lived until 88. Lupus is known to often go into long periods of remission in which some people can even reach nearly a decade of symptom resolution. Would you rather not have it? Of course, everyone on this forum would like to be able to eat gluten without it destroying their intestines but you learn to cope and you become stronger because of it.

You sound like you are in awful shape right now, so it can only get better from here. If you get diagnosed with lupus, well guess what? You get treatment, and it will help push it into remission. At this point, it is only upwards for symptoms so don't give up and don't even think about ending your life because of it! There are a lot of people here that have multiple autoimmune diseases, they are all doing fine. 

Go look through my old threads about my panic about Celiac when I was first faced with it's probable reality, I look back on those posts and laugh now. I also had a childhood friend that was diagnosed with Lupus very early and he is as healthy as anyone else, in fact at this point I would say he is in much better shape than me and most of my friends. The anxiety and depression that come with being newly diagnosed are temporary, you are in a TEMPORARY state of mind right now so it is very important to not act out in any harsh way because of it. 


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#14 IrishHeart

 
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Posted 18 March 2013 - 04:00 AM

Robb, you sound a lot like me and my friend Sherry (Dxed with c-diff in tandem with her celiac DX).

Do not give up. 

 

I was a mess before my DX. I even tried methotrexate (against my better judgement) upon the insistence of a snarky rheumatolgist. It made my gut worse and did nothing for the joint/bone pain. If a gut is impaired, meds can make us feel ten times worse. The meds are not absorbed. and may instead circulate in the body. I still can't tolerate medications at all. 

 

Your negative celiac tests are perplexing, but not uncommon. My celiac panel was negative, yet I have celiac.

And you could be gluten intolerant (not a celiac YET) and still have all the symptoms and AI diseases you have mentioned.

 

You need a better GI doctor. I wish you lived in NY...I'd walk you right into my guy in a heartbeat. You deserve to be taken seriously.

 

Please do not give up. I was in your boat for 3 years and I am a different person 2 years later. I have reclaimed my life and you can too.

 

I know that C-diff responds well to probiotics.  Lots of Pub Med journal articles on this, so please consider taking them.

Give the gluten-free/DF diet a strict trial for several months. Try to be patient (I know that is hard when you are in pain and feeling like total shyte, but please believe me, Lisa (Gotta Ski) and I GET IT. ) We share your painful symptoms,  but we have also improved drastically off gluten. We had a long road, but we're living proof healing happens. 

 

Dismissed by dozens of docs for many years, we know full well how frustrated you are.  But, you are not alone. 


Edited by IrishHeart, 18 March 2013 - 05:35 AM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 GottaSki

 
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Posted 18 March 2013 - 05:30 AM

Robb, you sound a lot like me and my friend Sherry (Dxed with c-diff in tandem with her celiac DX).

Do not give up. 

 

I was a mess before my DX. I even tried methotrexate (against my better judgement) upon the insistence of a snarky rheumatolgist. It made my gut worse and did nothing for the joint/bone pain. If a gut is impaired, meds can make us feel ten times worse. The meds are not absorbed. and may instead circulate in the body. I still can't tolerate medications at all. 

 

Your negative celiac tests are perplexing, but not uncommon. My celiac panel was negative, yet I have celiac.

And you could be gluten intolerant (not a celiac YET) and still have all the symptoms and AI diseases you have mentioned.

 

You need a better GI doctor. I wish you lived in NY...I'd walk you right into my guy in a heartbeat. You deserve to be taken seriously.

 

Please do not give up. I was in your boat for 3 years and I am a different person 2 years later. I have reclaimed my life and you can too.

 

I know that C-diff responds well to probiotics.  Lots of Pub Med journal articles on this, so please consider taking them.

Give the gluten-free/DF diet a strict trial for several months. Try to be patient (I know that is hard when you are in pain and feeling like total shyte, but please believe me, Lisa (Gotta Ski) and I GET IT. We share your painful symptoms  but we have also improved drastically off gluten. We had a long road, but we're living proof healing happens. 

 

Could not have said it better myself - and yes IrishHeart and I both have walked in your painful - frustrated - sick to death of doctors dismissing our symptoms - shoes.

 

I still wake each morning in a great deal of pain -- a 15-20 minute soak in hot epsom salt bath gets me moving and then unless I run into a food from my no-no list I am generally full steam until evening -- it has been at least ten years since I could say that! 

 

If doctors have run ALL of your celiac antibody tests then remove gluten as soon as possible.  If you are unsure if everything has been run - post them here and we can help sort out if you need other tests -- then demand, don't ask for them -- our doctors work for us -- even though they often forget this ;)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)






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