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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Is Wrong With Me
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23 posts in this topic

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

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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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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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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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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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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.suicidepreventionlifeline.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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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.suicidepreventionlifeline.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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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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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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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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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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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
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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 ;)

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Hi, Thanks for everyone responding, I have had Prometheus celiac antibody test but not the genetic test.  I've been gluten free and dairy free for exactly 7 days.  My alternative MD has me on the following diet.  Wild caught cod, wild caught salmon, leafy greens, carrots.  Thats it.  I've been taking colostrum and it stopped the diarrhea, but I think it is also raising my immune system and make my whole gut ache a little worse every day.  I picked colostrum because of its track record with c-diff.  I'm thinking about trying to beg someone into ordering the cyrex gluten sensitivity test, but I serlously doubt that I will get it.  My lower back pain is getting worse for some reason and my eyes are constantly running.  There just seems to be no end.  Robb

 

 

 

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 ;)

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As Karen has pointed out, there is no valid test for gluten sensitivity just yet. Save your cash.

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Hi Robb-

 

Has your pain increased on the diet you just listed?  If so, it is entirely possible it just is not the correct combo for you. For instance I consumed quite a bit of fresh spinach over the past few years -- thinking it was the best green for me -- WRONG -- it is high in histamine -- if you have severe damage in your small intestine - your body can't produce the enzyme necessary to regulate histamine.

 

Perhaps your body doesn't want that much fish?  Can you substitute chicken, beef or pork for a few days to see if it helps...

 

I completely understand the frustration that comes when you discover while eating seamingly perfect foods - they are not the right ones for your body.

 

Also, you are only at 7 days...your body could simply be detoxing -- I never really detoxed when I removed gluten -- but when I did a complete elimination diet -- it took my body about two or three weeks to detox.

 

PS>>> I agree -- don't waste your money on those tests.

Edited by GottaSki
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Hi, I honestly am so weary that I have no idea what try.  I've been unable to work since aug....My stomach hurts so bad today that I havn't eaten at all.  My latest ridiculous diagnosis is reactive hypoglycemia.  The only problem with that is that I've monitored my sugar for several days and it sits at 85 whether I eat or not.  The doctor that gave me that diagnosis argued with me and told me she was positive thats what my problem was.  She is wrong.  The dumb guesses these doctors are making isn't helping me at all.......Robb

 

 

 

 

Hi Robb-

 

Has your pain increased on the diet you just listed?  If so, it is entirely possible it just is not the correct combo for you. For instance I consumed quite a bit of fresh spinach over the past few years -- thinking it was the best green for me -- WRONG -- it is high in histamine -- if you have severe damage in your small intestine - your body can't produce the enzyme necessary to regulate histamine.

 

Perhaps your body doesn't want that much fish?  Can you substitute chicken, beef or pork for a few days to see if it helps...

 

I completely understand the frustration that comes when you discover while eating seamingly perfect foods - they are not the right ones for your body.

 

Also, you are only at 7 days...your body could simply be detoxing -- I never really detoxed when I removed gluten -- but when I did a complete elimination diet -- it took my body about two or three weeks to detox.

 

PS>>> I agree -- don't waste your money on those tests.

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Merry Christmas..........my C-Diff is back........Robb

 

 

 

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. 

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Merry Christmas..........my C-Diff is back........Robb

 

Hang in there....IrishHeart is spot on...you are not alone - many of us have been through similar frustrations.  It can get better.

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This is round three.  I honestly don't think its going to get better because of the inflammation in my gut.  I've had that same exact problem with my sinus infection for the last 15 years.....now its in my gut.  All of the vancomycin in the world isn't going to clear it up.  Robb

 

 

 

 

Hang in there....IrishHeart is spot on...you are not alone - many of us have been through similar frustrations.  It can get better.

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    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
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