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Reflux And Myofascial Pain


Martyg

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Martyg Apprentice

It's been awhile since I have looked at this forum. Thought I was really doing okay. Diagnosed in 2005, been gluten free since then. Diagnosed with Hashi's in 1999. On dissicated thyroid. Lab levels fine.

In 2009 began to have some mid back pain, but because I was in the midst of changing thyroid meds, thought it was all from that. Had a few months of discomfort, then everything seemed to even out. This year, bad cold in summer with fever and cough that lasted a month. Then in September mid back spasms began again, this time with indigestion, heartburn. Been to massage therapist, PT, DO, have done TENS, PENS, heat, cold, acupuncture and everything but the kitchen sick. December began to have horrible heartburn. Had a barium swallow and it showed mild reflux and small hiatia hernia (been there for over 20 years) and mild esphogitis (sp?). Taking DGL, Aloe, probiotics, raw honey, L-Glutamine, digestive enzymes, slippery elm tea, chew gum after I eat. I have no appetite. I am also a vegetarian. I have lost more weight than I can afford and am constantly worried that this will never end.

I have not felt well in so long, I fear I will be like this until I die. I am seeing a physical therapist next week who does myofascial release to see if that will help. I feel nauseous most of the time and am afraid to eat anything. One person says no nuts, no nuts butter, no fat, another, eat nuts. This is all so confusing.

I could use all the help I can get. I feel utterly alone and don't know what to do next. I have tried Priolec and Zantax and Pepcid. None of these worked and from what I have read, do more harm than good.

A lot of stress, two cats that are very ill.

Thanks for listening.

Marty


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IrishHeart Veteran

It's been awhile since I have looked at this forum. Thought I was really doing okay. Diagnosed in 2005, been gluten free since then. Diagnosed with Hashi's in 1999. On dissicated thyroid. Lab levels fine.

In 2009 began to have some mid back pain, but because I was in the midst of changing thyroid meds, thought it was all from that. Had a few months of discomfort, then everything seemed to even out. This year, bad cold in summer with fever and cough that lasted a month. Then in September mid back spasms began again, this time with indigestion, heartburn. Been to massage therapist, PT, DO, have done TENS, PENS, heat, cold, acupuncture and everything but the kitchen sick. December began to have horrible heartburn. Had a barium swallow and it showed mild reflux and small hiatia hernia and mild esphogitis (sp?). Taking DGL, Aloe, probiotics, raw honey, L-Glutamine, digestive enzymes, slippery elm tea, chew gum after I eat. I have no appetite. I am also a vegetarian. I have lost more weight than I can afford and am constantly worried that this will never end.

I have not felt well in so long, I fear I will be like this until I die. I am seeing a physical therapist next week who does myofascial release to see if that will help. I feel nauseous most of the time and am afraid to eat anything. One person says no nuts, no nuts butter, no fat, another, eat nuts. This is all so confusing.

I could use all the help I can get. I feel utterly alone and don't know what to do next. I have tried Priolec and Zantax and Pepcid. None of these worked and from what I have read, do more harm than good.

A lot of stress, two cats that are very ill.

Thanks for listening.

Marty

Hi Marty,

I saw your topic header and thought...that's me! I am newly DXed (1 month ago)and still struggling with so many symptoms, so I am not sure I can be much help to you. I guess I just felt your frustration and feeling of "aloneness" and wanted to respond.

I still suffer that heartburn/throat burning/nausea and hope it will resolve as I continue the gluten-free diet.

I have done all the things you have--for the whole time during '09 and '10....tons of $$$$ on supplements: aloe, slippery elm, digestive enzymes,probiotics, etc. No help.

Reason? I didn't know about the gluten.

But you are gluten-free, so I wonder why you have this now?

One thing I do know is...it is possible to have NOT enough stomach acid (more prevalent in celiacs) rather than too much acid. So taking antacids seems counter-productive. I took them for YEARS on the advice of a gastro...never helped. Now I know why!

Maybe try ONE of the things at a time and see it it helps? the aloe ,made my throat burn more and gave me raging diarrhea...not helpful. Sometimes, too many supps can be problematic.

I can relate about the back pain (I have pain just about everywhere) and in 3 years, I have been to several PTs, chiros, DO, had myofacsial release, several MTs and acupuncture--from 3 diff. people. THOUSANDS of $$$$ and no relief.

My bloodwork shows no RA stuff. ( I do have osteoarthritis but it doesn;t explain the pain and reflux symptoms)

Nothing seemed to help.

I finally found a PT who specializes in trigger point pain and she is very savvy about gluten and maintains that I will respond better to treatment as the gluten is eliminated and my muscles can respond. I pray she is right.

I have taken stress management classes and I try yoga. You name it, I have done it to get my muscles, my body, my GI tract to relax.

That said, I am not sure why you would have pain now as you have been gluten-free for so long.

Some things to consider:

Have you been eating anything new/different for you?

Do you eat a lot of soy? I have to avoid that as it makes me sick. Many people on here say the same thing.

You mention two cats being ill. For me, stress makes things worse. I know how difficult it can be dealing with that, too! (Just went through it with one of mine)

You also mention being vegetarian and losing weight. Do you get enough protein?

I dropped 90 lbs, rapidly before DX.It is scary.

A sweet person on here suggested good old pepto bismal to me for the nausea/heartburn. It helps because it contains bismuth, something lacking if you have had a gall bladder issue or if it was removed (like me)

Just some thoughts, having been through this myself. I feel for you and hope you get relief soon. Wish I could be more help. Ginny

csten Newbie

Was reading both of your posts..I am also new at all of this. Last October an endoscope biopsy showed I had blunted villi, but the celiac blood tests were negative. Doc wanted me to go gluten free for a month and see how I do. I am three days into that...but my question was to both of you, What is the Myofacial release? I also have TMJ and myofacial pain and headaches continually. I also have much back pain which one of my PTs said was from the TMJ and I have two bulging discs. Anyway, I was curious to what the myofacial release was. Thanks!

cassP Contributor

csten:

Fascia is the connective tissue that connects the skin to your bones and muscles- if it's really tight it can cause a lot of muscular pain. an LMT will use different techniques- and without any lotion- to manipulate and soften the fascia. have u ever had an LMT do "skin rolling" on you- and it hurts- they're trying to break up the fascia.

im an LMT, and know quite a bit- yet i still am guessing sometimes on my own pain. it's hard to tell when the pain starts in the organs and radiates to the muscles- or if it starts from the muscles inwards... cant tell sometimes- what is causing my pain. cause everything is so interconnected! you know an Osteopath explained to me that seized up back muscles and out of line spine can send HYPER signals to the intestines, even causing "D". it's really confusing- and i wish i knew the cause of all my pains. for example- there were times where i thought i was having horrific problems in my Descending colon- when i was really just having Iliopsoas spasms.

anyways-

MartyG: have u ever wondered if maybe your body would feel better on meat & fish?? and as a vegetarian- are you getting enough vegtable protein? some people make more stomach acid- because they were designed to digest meat, while others dont make enough. ??? i feel way better on meat..

also- do you think you might have gall bladder issues? there's a great product i have used in the past to prepare for liver flushes. it's called Gold Coin Grass. i get it at www.sensiblehealth.com it really goes into the gall bladder and softens and dissolves stones and stagnant bile. it also works like a digestive bitter- so if you take it- you must eat 20 minutes after.

?? hope you find some relief soon

IrishHeart Veteran

csten:

Fascia is the connective tissue that connects the skin to your bones and muscles- if it's really tight it can cause a lot of muscular pain. an LMT will use different techniques- and without any lotion- to manipulate and soften the fascia. have u ever had an LMT do "skin rolling" on you- and it hurts- they're trying to break up the fascia.

im an LMT, and know quite a bit- yet i still am guessing sometimes on my own pain. it's hard to tell when the pain starts in the organs and radiates to the muscles- or if it starts from the muscles inwards... cant tell sometimes- what is causing my pain. cause everything is so interconnected! you know an Osteopath explained to me that seized up back muscles and out of line spine can send HYPER signals to the intestines, even causing "D". it's really confusing- and i wish i knew the cause of all my pains. for example- there were times where i thought i was having horrific problems in my Descending colon- when i was really just having Iliopsoas spasms.

anyways-

MartyG: have u ever wondered if maybe your body would feel better on meat & fish?? and as a vegetarian- are you getting enough vegtable protein? some people make more stomach acid- because they were designed to digest meat, while others dont make enough. ??? i feel way better on meat..

also- do you think you might have gall bladder issues? there's a great product i have used in the past to prepare for liver flushes. it's called Gold Coin Grass. i get it at www.sensiblehealth.com it really goes into the gall bladder and softens and dissolves stones and stagnant bile. it also works like a digestive bitter- so if you take it- you must eat 20 minutes after.

?? hope you find some relief soon

Cass-

I second your thoughts about the spine and nerve signals/pain pathways!! (I have learned so much from PTs and DOs and just reading all I can during the past few years trying to manage this burning muscle pain.) The muscles/tendons/fascia are greatly impacted by leaky guts and circulating toxins. Taut bands in a muscle can harbor trigger points and those tiny contractions can wreak havoc anywhere in the body, sending pain to places you wouldn't think were connected at all. A tight illopsoas in my lower left abdomen has made my life hell. It causes pain and burning in my leg, buttock, sciatic nerve. I haven't been able to sit or lie down comfortably for 3 years. Rubbing those places does nothing, it's the tight illopsoas! I have severe jaw pain, but it's coming from my neck muscles that are so tight you could bounce a dime off them.

And when the colon is in spasm from gluten, causing D or constipation, well...it can make those abdominal muscles all the more tight and in pain. And then, we tend to guard our tummies, slouching in pain and that pulls on the back muscles and on and on.

Does this sound right, Cass?

Hopefully, a good MT or PT may be able to help you guys. I had no luck with MFR, but it could be because I have been sick for so long. Fortunately, I found a great PT who understands celiac and has helped me quite a bit, even though I have a long way to go to recover my major loss of muscle mass to a rapid 90 lb. weight loss due to this disease.

Marty--

I know you probably want to stay a vegetarian and I really respect that, but I agree with Cass about eating some fish or meat, if you can choke it down. A body in trouble craves protein, hon.

At the suggestion of another on here, I tried the pepto bismal--which contains bismuth--(I have no gall bladder) and it helped with the burning tummy and esophagus. I feel tons better than I did two days ago when I was crying in horrible pain.

I hope you start feeling better soon.

Ginny

cassP Contributor

wow ginny- reading your first paragraph above- gave me so much comfort to know that someone else goes thru all the crazy confusing pains!!! it makes me feel not so alone.

hope we all have some pain free days ahead :)

Martyg Apprentice

Thanks so much for all of the responses.

I have had an abdominal ultrasound, no gallbladder issues, all organs looked fine, had MRI, discs okay, had x-ray, some osteopenia, nothing dramatic, had barium swallow, mild reflux.

My DO believes that years and years and years spent in front of the computer (my job) and the last seven not really sitting/working correctly has caused repetitive strain, which in turn causes digestive issues. This is not something really new for me as when anything in my back goes out, it affects something on the other side. This time, just much worse and for a much, much longer time. T-4 to T9 trigger points are extremely tight. Release is difficult though he managed to do a little yesterday morning. I sat with heat lamp on it last night, helped to calm it down and helped the reflux. I feel like a dog chasing my tail.

Maybe your right, too many supplements, trying too much, but because I have been battling this for so long, I am beside myself.

I have been a vegetarian for over 35 years, though I do eat fish and eggs. I eat organic, plenty of veggies, use olive oil for cooking, salads, use coconut oil in cerals.

The stress with my animals is ongoing. One is getting ready to leave and the other has neuro issues. They are both senior and I guess I should expect that, but it has been stressful and been going on for 3 years. They are very dear to me and they are both still eating and wanting to be with me, so there is no question about "assisting" them.

I worry about having more food allergies and because my diet is already so limited, I am not sure what else I could give up.

I need to gain weight, any suggestions that would not upset my stomach.

Marty


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Martyg Apprentice

Hi Marty,

I saw your topic header and thought...that's me! I am newly DXed (1 month ago)and still struggling with so many symptoms, so I am not sure I can be much help to you. I guess I just felt your frustration and feeling of "aloneness" and wanted to respond.

I still suffer that heartburn/throat burning/nausea and hope it will resolve as I continue the gluten-free diet.

I have done all the things you have--for the whole time during '09 and '10....tons of $$$$ on supplements: aloe, slippery elm, digestive enzymes,probiotics, etc. No help.

Reason? I didn't know about the gluten.

But you are gluten-free, so I wonder why you have this now?

One thing I do know is...it is possible to have NOT enough stomach acid (more prevalent in celiacs) rather than too much acid. So taking antacids seems counter-productive. I took them for YEARS on the advice of a gastro...never helped. Now I know why!

Maybe try ONE of the things at a time and see it it helps? the aloe ,made my throat burn more and gave me raging diarrhea...not helpful. Sometimes, too many supps can be problematic.

I can relate about the back pain (I have pain just about everywhere) and in 3 years, I have been to several PTs, chiros, DO, had myofacsial release, several MTs and acupuncture--from 3 diff. people. THOUSANDS of $$$$ and no relief.

My bloodwork shows no RA stuff. ( I do have osteoarthritis but it doesn;t explain the pain and reflux symptoms)

Nothing seemed to help.

I finally found a PT who specializes in trigger point pain and she is very savvy about gluten and maintains that I will respond better to treatment as the gluten is eliminated and my muscles can respond. I pray she is right.

I have taken stress management classes and I try yoga. You name it, I have done it to get my muscles, my body, my GI tract to relax.

That said, I am not sure why you would have pain now as you have been gluten-free for so long.

Some things to consider:

Have you been eating anything new/different for you?

Do you eat a lot of soy? I have to avoid that as it makes me sick. Many people on here say the same thing.

You mention two cats being ill. For me, stress makes things worse. I know how difficult it can be dealing with that, too! (Just went through it with one of mine)

You also mention being vegetarian and losing weight. Do you get enough protein?

I dropped 90 lbs, rapidly before DX.It is scary.

A sweet person on here suggested good old pepto bismal to me for the nausea/heartburn. It helps because it contains bismuth, something lacking if you have had a gall bladder issue or if it was removed (like me)

Just some thoughts, having been through this myself. I feel for you and hope you get relief soon. Wish I could be more help. Ginny

Got some injections in trigger points in back, so I understand that concept. The two ill cats are ongoing. Not sure if getting enough protein. Will check that will my chiro tonight who has said something about plant protein drink.

Marty

IrishHeart Veteran

Got some injections in trigger points in back, so I understand that concept. The two ill cats are ongoing. Not sure if getting enough protein. Will check that will my chiro tonight who has said something about plant protein drink.

Marty

Hi Marty-

Hope the protein drink helps!!

I can relate to the pets issue. My "furry kids" are very important to me. It's difficult to have them become ill.

Hope you get some relief soon. I have pain 24/7 from myofascial pain and I can't take a thing for it...3 years of this and my family wonders how I stay sane.(not sure I am at this point :blink: ) TrP injections did not help me at all. Be careful of too many---if they are steroids, that can impact adrenals, or so I was told by an ND.

Did you notice...everyone has an opinion about food we should eat?? :>)

Take this, try that, don't eat this, do eat that...yikes. If I followed the advice of the doctors and alternative practitioners I have seen, I would have had to eliminate all meat, nightshades, all grains, dairy, soy, gluten, yeast, sugar, eggs, nuts, fish (mercury), oxalates, beans, fruits, ....what the heck is left? "ionized" water (whatever the hell that is), lettuce and spirulina powder? It gets crazy after a while...

Take care and let me know how you make out.

Ginny

IrishHeart Veteran

wow ginny- reading your first paragraph above- gave me so much comfort to know that someone else goes thru all the crazy confusing pains!!! it makes me feel not so alone.

hope we all have some pain free days ahead :)

Hey Cass!

Reading what people say on here has been more than validating for me...and yes! very comforting. While I would not wish such pain on anyone else, it DOES help to know I am not alone and that others "get it"! Everyone here has been so helpful and encouraging and even though in my heart I felt I would find an answer to all my pain and illness, I had to work hard to stay sane and focused through all that pain and fatigue and trips to the bathroom...I have received an unbelievable boost of renewed strength and energy from reading these posts!! You guys are the best. Take care!

Ginny

cassP Contributor

Thanks so much for all of the responses.

I have had an abdominal ultrasound, no gallbladder issues, all organs looked fine, had MRI, discs okay, had x-ray, some osteopenia, nothing dramatic, had barium swallow, mild reflux.

My DO believes that years and years and years spent in front of the computer (my job) and the last seven not really sitting/working correctly has caused repetitive strain, which in turn causes digestive issues. This is not something really new for me as when anything in my back goes out, it affects something on the other side. This time, just much worse and for a much, much longer time. T-4 to T9 trigger points are extremely tight. Release is difficult though he managed to do a little yesterday morning. I sat with heat lamp on it last night, helped to calm it down and helped the reflux. I feel like a dog chasing my tail.

Maybe your right, too many supplements, trying too much, but because I have been battling this for so long, I am beside myself.

I have been a vegetarian for over 35 years, though I do eat fish and eggs. I eat organic, plenty of veggies, use olive oil for cooking, salads, use coconut oil in cerals.

The stress with my animals is ongoing. One is getting ready to leave and the other has neuro issues. They are both senior and I guess I should expect that, but it has been stressful and been going on for 3 years. They are very dear to me and they are both still eating and wanting to be with me, so there is no question about "assisting" them.

I worry about having more food allergies and because my diet is already so limited, I am not sure what else I could give up.

I need to gain weight, any suggestions that would not upset my stomach.

Marty

sorry, anytime someone needs suggestions to gain weight- i feel like they're talking in martian language :lol:

ive never had those kind of issues- but maybe i do have good advice- idk marty- we're all different- FOR ME- i feel BEST & SKINNIEST the more Paleo i can be- any complex carbs keep the weight on me-

so i would suggest, can u eat rice?????? or rice pasta??? this should help 5lbs to always stick... if you're anything like me...

and i think thats good that u eat fish and eggs- what about turkey? i think turkey is high in protein & iron and that almost everybody can digest it (while some cannot handle red meat or chicken).??

also- **you talk about your pets having neuro issues, etc... have u ever heard of Dr. J and his "G.A.R.D. diet". now i know, people on here will get really arguementative about him- and his ideas on how far reaching gluten is and "secondary glutenization"... BUTTTT i am bringing him up because you mention your pets- so i think you should google him- at least for your pets. he's a really nice guy, he's a Veterinarian who has Celiac. and he talks a lot on his website about Gluten, Dairy, Soy, Corn, Neuro Issues, Arthritis, etc, etc, for people AND PETS- you might find it very interesting!

IrishHeart Veteran

sorry, anytime someone needs suggestions to gain weight- i feel like they're talking in martian language :lol:

ive never had those kind of issues- but maybe i do have good advice- idk marty- we're all different- FOR ME- i feel BEST & SKINNIEST the more Paleo i can be- any complex carbs keep the weight on me-

so i would suggest, can u eat rice?????? or rice pasta??? this should help 5lbs to always stick... if you're anything like me...

and i think thats good that u eat fish and eggs- what about turkey? i think turkey is high in protein & iron and that almost everybody can digest it (while some cannot handle red meat or chicken).??

also- **you talk about your pets having neuro issues, etc... have u ever heard of Dr. J and his "G.A.R.D. diet". now i know, people on here will get really arguementative about him- and his ideas on how far reaching gluten is and "secondary glutenization"... BUTTTT i am bringing him up because you mention your pets- so i think you should google him- at least for your pets. he's a really nice guy, he's a Veterinarian who has Celiac. and he talks a lot on his website about Gluten, Dairy, Soy, Corn, Neuro Issues, Arthritis, etc, etc, for people AND PETS- you might find it very interesting!

Marty,

I ditto eating the rice pasta (tinkyada is delish!) and maybe some gluten-free breads you bake yourself? can you eat ghee ? I used to be 215 lbs. in 2007...could not lose weight for years, no matter how hard I tried.When the celiac triggered, I plummeted to 122....go figure. (One doctor told me it was good I lost weight because I was too obese...HUH??? didn't matter it happened so quickly without dieting and that I was living in my bathroom and my hair was on the floor. Just one of many idiots I met ) I had to get really sick to be thin, but with the massive muscle mass I lost, I am unhealthy. I hope for a balance some day. Trim and healthy!

I hope you feel better soon!

Martyg Apprentice

Hi Marty-

Hope the protein drink helps!!

I can relate to the pets issue. My "furry kids" are very important to me. It's difficult to have them become ill.

Hope you get some relief soon. I have pain 24/7 from myofascial pain and I can't take a thing for it...3 years of this and my family wonders how I stay sane.(not sure I am at this point :blink: ) TrP injections did not help me at all. Be careful of too many---if they are steroids, that can impact adrenals, or so I was told by an ND.

Did you notice...everyone has an opinion about food we should eat?? :>)

Take this, try that, don't eat this, do eat that...yikes. If I followed the advice of the doctors and alternative practitioners I have seen, I would have had to eliminate all meat, nightshades, all grains, dairy, soy, gluten, yeast, sugar, eggs, nuts, fish (mercury), oxalates, beans, fruits, ....what the heck is left? "ionized" water (whatever the hell that is), lettuce and spirulina powder? It gets crazy after a while...

Take care and let me know how you make out.

Ginny

I know what you mean about eating. I find it difficult enough being celiac and vegetarian and then on top of that, everyone has a opinion about everything else. Do fish oil, don't do fish oil. eat nuts, don't eat nuts. Sometimes the pain/discomfort makes me feel like I will never feel "good" again. Just to wake up and feel normal. When I lay in bed the back does not seem to bother me as much and sleep is fine as far a pain. If I stay in bed for a day or two, then I get depressed, because I think, this is how I'm going to spend the rest of my life????

I weigh what I weighed at 17, it was fine then, now I just look pathetic, everything hangs on me. I am only 5'2" and under 100#, small frame. No wiggle room to get sick. Cannot afford to lose anymore. Of course, the IBS is always lurking there in the background, ready to kick in.

I do have an appointment with a PT who does myofasical release. Hopefully he is good. As far as the shots, I have only

gotten them once and don't think I will do that again. I am wearing a lanocaine patch to see if that will help.

I'll let you know how the PT works out.

Thanks for listening and for the feedback.

Marty

Martyg Apprentice

sorry, anytime someone needs suggestions to gain weight- i feel like they're talking in martian language :lol:

ive never had those kind of issues- but maybe i do have good advice- idk marty- we're all different- FOR ME- i feel BEST & SKINNIEST the more Paleo i can be- any complex carbs keep the weight on me-

so i would suggest, can u eat rice?????? or rice pasta??? this should help 5lbs to always stick... if you're anything like me...

and i think thats good that u eat fish and eggs- what about turkey? i think turkey is high in protein & iron and that almost everybody can digest it (while some cannot handle red meat or chicken).??

also- **you talk about your pets having neuro issues, etc... have u ever heard of Dr. J and his "G.A.R.D. diet". now i know, people on here will get really arguementative about him- and his ideas on how far reaching gluten is and "secondary glutenization"... BUTTTT i am bringing him up because you mention your pets- so i think you should google him- at least for your pets. he's a really nice guy, he's a Veterinarian who has Celiac. and he talks a lot on his website about Gluten, Dairy, Soy, Corn, Neuro Issues, Arthritis, etc, etc, for people AND PETS- you might find it very interesting!

My oldest cat has a brain tumor and is too old to operate. He is on steroids and phenobarbitol.He also has hyperthyroid and I am using Lithium acetate.He has lost over 50% of his weight, my little girl cat has neuro issues that no one can figure out. She walks in circles, has artheritis in her front paws, losing weight, and cannot process what she sees. They think some sort of brain lesion, but not sure what. I take them to a holistic vet by the name of Judith Shoemaker about 40 miles from my home. She does chiro and acupuncure to help their bodies. They eat a raw diet and organic grain free canned. One rescue and 3 Maine Coons. They are my dearest friends and it is difficult.

Thanks for your input.

Marty

IrishHeart Veteran

I know what you mean about eating. I find it difficult enough being celiac and vegetarian and then on top of that, everyone has a opinion about everything else. Do fish oil, don't do fish oil. eat nuts, don't eat nuts. Sometimes the pain/discomfort makes me feel like I will never feel "good" again. Just to wake up and feel normal. When I lay in bed the back does not seem to bother me as much and sleep is fine as far a pain. If I stay in bed for a day or two, then I get depressed, because I think, this is how I'm going to spend the rest of my life????

I weigh what I weighed at 17, it was fine then, now I just look pathetic, everything hangs on me. I am only 5'2" and under 100#, small frame. No wiggle room to get sick. Cannot afford to lose anymore. Of course, the IBS is always lurking there in the background, ready to kick in.

I do have an appointment with a PT who does myofasical release. Hopefully he is good. As far as the shots, I have only

gotten them once and don't think I will do that again. I am wearing a lanocaine patch to see if that will help.

I'll let you know how the PT works out.

Thanks for listening and for the feedback.

Marty

I hope the MFR does the trick for you!

Ginny

cap6 Enthusiast

First I would like to say that I agree with cassP and have read about the G.A.R.D. diet and while I don't do all that he says I do believe that gluten is very bad for our pets. We have five dogs and took them off of gluten in June - mainly because I didn't want to have to handle gluteny food. Since going gluten-free the furry kids general health has improved. Coats are no longer flaky, potty issues have improved, general health is better - even our crabby girl's temperament has improved. They are ages 10 to 15 years old. It's worth checking into.

I have suffered heartburn on and off for years. So much more since getting sick with Celiac. Have been on Prilosec for almost 2 yrs. Tried to wean off a couple of times but each time it gets to a point where it feels like pure acid is being pouring into the stomach. So.. it's back to the prilosec. Don't know what else to do. Also have had issues with constipation all my life but since going gluten-free it is chronic to the point of needing 2 ducalax every night. I take the supplements but it is as it is I guess.

Sorry this was so long but just wanted to share.

cassP Contributor

My oldest cat has a brain tumor and is too old to operate. He is on steroids and phenobarbitol.He also has hyperthyroid and I am using Lithium acetate.He has lost over 50% of his weight, my little girl cat has neuro issues that no one can figure out. She walks in circles, has artheritis in her front paws, losing weight, and cannot process what she sees. They think some sort of brain lesion, but not sure what. I take them to a holistic vet by the name of Judith Shoemaker about 40 miles from my home. She does chiro and acupuncure to help their bodies. They eat a raw diet and organic grain free canned. One rescue and 3 Maine Coons. They are my dearest friends and it is difficult.

Thanks for your input.

Marty

im sorry your pets are having such debhilitating issues- i love animals- they're so innocent and loving- and i am feeling brokenhearted for you. xxx

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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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