Your story discovering you were a celiac.

[Azazello]

Now that I know that I am celiac from the biopsy. And that I discovered this from a few weeks of debilitating fatigue, confusion and nausea as my only symptoms. I want to hear your guys stories on how you came to discover you were a celiac. What was the journey like?

[Scott Adams]

My journey took what seemed like forever, and it's summarized here:

 

[Celiac Kim]

On 6/4/2023 at 3:10 PM, Azazello said:

Now that I know that I am celiac from the biopsy. And that I discovered this from a few weeks of debilitating fatigue, confusion and nausea as my only symptoms. I want to hear your guys stories on how you came to discover you were a celiac. What was the journey like?

Hello

I was diagnosed 3 years ago.  I was 53. 
Two years prior to being diagnosed, I had on and off again mild symptoms, but ignored them because they always went away. I didn’t even know what Celiac Disease was. Then I became very very sick, and it didn’t go away. I lost 30 lbs  within a month so I knew something was seriously wrong. My doctors here were pushing me off with other things and finally my husband made me go to Mayo Clinic. In two days they had me diagnosed. I had the gene, the antibodies, and a positive biopsy.  I immediately  started a strict gluten free diet.  Mayo had me work with a dietician. It took me two months to start to feel better.  I did have a bad bought of depression. Never a problem before. I had to be put on an anti depressant.  I hated that! I believe the depression came from the damage in my gut which caused a chemical imbalance in the brain. Once my gut healed, things got back to normal. I slowly started to wean off of the drug.   My goal was to recover, and get off that nasty drug.  And gain weight again. 
I am happy to say that I have recovered, I have gained weight again (slowly)  I have the diet under control, I am off the anti depressant, and I feel really good again. It’s been a journey. I am so grateful I have my life back again!

Kim

[Ronnie d]

my journey started with terrible itching that became blisters on my knees. i assumed it was from being on my knees where a septic system line once ran where i was installing and rolling new grass around a new swimming pool (yes, we dug up and moved the line to place a 13,000 gallon in ground pool) i assumed it was either that, or poison oak or ivy.

i did go to my doctor who took a sample and sent it off for celiac and it came back negative.  

i went two aditional years with blisters on fingers elbows,knees,scalp sores that itched, and behind cheeks that itched. this process was terribly uncomfortable with the itching,then blisters, then sores that scabbed over.

i didnt go back to doctor for this predicament but when i needed to see an urgent care for a cough,flu etc....i'd show the 4 doctors i visited over the course of 2 years....the blisters and scabs to no avail. finally the 4th doctor trying to help, decided because of my cough, blisters,etc...he'd give me a super antibiotic called hydroxyflouroquinoline...whoa nellie...turns out i was one of 99000 that was allergic to it and spent a few days having all joints and tendons attacked that left me bed ridden and on crutches and a walker for about a week(after only 6 doses, lol....once we learned the cause we quit with that super antibiotic....i was cured of the tendon and joint issue after about a week...

but continued on with the blisters about another year....i tried everything for a cure, including diet, lotions,etc....

finally in the end i went to a dematologists that took two biopsies.one for celiac, and one for infection......so in the end it was proven that the 1st doctors sample taken for the celiac test was the blister, and didnt have enough skin beside the blister which is where the test yields its results....and 2nd i had staph infection...

my cure was dapsone once a day. within 24 hours the blisters stopped developing....and the staph was cured with a simple antibiotic.

just so everyone reading this knows, the dermatologist told me to take the dapsone until the blisters stop, and to even try skipping a day or so between doses to see just how low i could get the dapsone dosage and still be effective.  her other suggestion was to stop altogether after a few months to see if the dermatitis herpetiformis would go into remission, and it did....

for note you can have celiac without dermatitus herpetaphormis, but all with dermatitus herpetaphormis have celiac.

in ending if you have any of these symptoms do yourself a favor and make an appointment with a dematologist....Br Burgy was a blessing to me.

ronnie

[Scott Adams]

5 hours ago, Celiac Kim said:

Hello

I was diagnosed 3 years ago.  I was 53. 
Two years prior to being diagnosed, I had on and off again mild symptoms, but ignored them because they always went away. I didn’t even know what Celiac Disease was. Then I became very very sick, and it didn’t go away. I lost 30 lbs  within a month so I knew something was seriously wrong. My doctors here were pushing me off with other things and finally my husband made me go to Mayo Clinic. In two days they had me diagnosed. I had the gene, the antibodies, and a positive biopsy.  I immediately  started a strict gluten free diet.  Mayo had me work with a dietician. It took me two months to start to feel better.  I did have a bad bought of depression. Never a problem before. I had to be put on an anti depressant.  I hated that! I believe the depression came from the damage in my gut which caused a chemical imbalance in the brain. Once my gut healed, things got back to normal. I slowly started to wean off of the drug.   My goal was to recover, and get off that nasty drug.  And gain weight again. 
I am happy to say that I have recovered, I have gained weight again (slowly)  I have the diet under control, I am off the anti depressant, and I feel really good again. It’s been a journey. I am so grateful I have my life back again!

Kim

Welcome to the forum, and it's great to hear stories like yours--thank you for sharing!

[Kurlykaitlyn]

I’m 28 and I was diagnosed four years ago at age 24. 
i grew up having stomach pains for as long as I can remember. I would eat a few bites of a meal and be done. My parents were divorced. I mostly lived with mom. My dad saw something was wrong because the lack of appetite and excessive gas. He expected my mother to do something about it and she always just said “she’s fine.” I began skipping meals around age 11 and especially often at sleep away camps or events. I never felt good after eating. I was extremely anxious and constantly ran on adrenaline. I developed an ED as a teen that lasted a few years. After recovering from the ED  , I began trying lots of new foods I hadn’t previously eaten and recipes. Everything made me feel sick. It felt that way. High stress and sadness. Panic attacks at work because of being hungry but fear of finding food that won’t ail me. I got an endoscopy when I was about 21 and the doctor hesitated while telling me it didn’t look like celiac disease quite. I never forgot that line. What is celiac disease? I had no clue. Also, I rarely ate gluten at this time for years already due to it making me feel crap and ED.
I studied as a health coach in a program when I was 23 and saw a talk from Jennifer Esposito. She shared her celiac story and there was so much similarity, I cried a lot and decided I needed to be tested. I ate gluten for a miserable month. Kept having to visit a doctor for ailing symptoms and an ER visit where I was literally falling over in pain. I didn’t do an endoscopy again but the doctor did blood or antigen testing and based on my history diagnosed me at age 24. It took time to fully heal but in the last few years I actually have felt healthy and ‘normal.’ I was ecstatic at time of diagnosis to finally have an answer and truly it changed my life to know! Also my mom and baby brother have very similar stomach and digestive issues, as well as joint pains. They haven’t gotten tested but I keep telling them they should. 

[Azazello]

On 6/4/2023 at 8:29 PM, Scott Adams said:

My journey took what seemed like forever, and it's summarized here:

 

Woah, I can't even imagine the torture of years to figure it out. I feel so fortunate to live in present day of medical knowledge. And that a site like this exists. I literally use it everyday to figure out what is safe for me to eat in my day to day life. 

[Azazello]

On 6/23/2023 at 9:14 PM, Kurlykaitlyn said:

I’m 28 and I was diagnosed four years ago at age 24. 
i grew up having stomach pains for as long as I can remember. I would eat a few bites of a meal and be done. My parents were divorced. I mostly lived with mom. My dad saw something was wrong because the lack of appetite and excessive gas. He expected my mother to do something about it and she always just said “she’s fine.” I began skipping meals around age 11 and especially often at sleep away camps or events. I never felt good after eating. I was extremely anxious and constantly ran on adrenaline. I developed an ED as a teen that lasted a few years. After recovering from the ED  , I began trying lots of new foods I hadn’t previously eaten and recipes. Everything made me feel sick. It felt that way. High stress and sadness. Panic attacks at work because of being hungry but fear of finding food that won’t ail me. I got an endoscopy when I was about 21 and the doctor hesitated while telling me it didn’t look like celiac disease quite. I never forgot that line. What is celiac disease? I had no clue. Also, I rarely ate gluten at this time for years already due to it making me feel crap and ED.
I studied as a health coach in a program when I was 23 and saw a talk from Jennifer Esposito. She shared her celiac story and there was so much similarity, I cried a lot and decided I needed to be tested. I ate gluten for a miserable month. Kept having to visit a doctor for ailing symptoms and an ER visit where I was literally falling over in pain. I didn’t do an endoscopy again but the doctor did blood or antigen testing and based on my history diagnosed me at age 24. It took time to fully heal but in the last few years I actually have felt healthy and ‘normal.’ I was ecstatic at time of diagnosis to finally have an answer and truly it changed my life to know! Also my mom and baby brother have very similar stomach and digestive issues, as well as joint pains. They haven’t gotten tested but I keep telling them they should. 

Woah. That sounds like quite the emotional journey. It's crazy to think how quickly ones life can dramatically change. Diagnosed same age as me! I'm glad things improved so quickly. I still have to wait a couple weeks to see a rheumatologist for my joint pain. I'm terrified of getting another autoimmune disorder and hoping its just celiac. You're right, they should really get tested!

[Azazello]

On 6/14/2023 at 5:36 AM, Celiac Kim said:

Hello

I was diagnosed 3 years ago.  I was 53. 
Two years prior to being diagnosed, I had on and off again mild symptoms, but ignored them because they always went away. I didn’t even know what Celiac Disease was. Then I became very very sick, and it didn’t go away. I lost 30 lbs  within a month so I knew something was seriously wrong. My doctors here were pushing me off with other things and finally my husband made me go to Mayo Clinic. In two days they had me diagnosed. I had the gene, the antibodies, and a positive biopsy.  I immediately  started a strict gluten free diet.  Mayo had me work with a dietician. It took me two months to start to feel better.  I did have a bad bought of depression. Never a problem before. I had to be put on an anti depressant.  I hated that! I believe the depression came from the damage in my gut which caused a chemical imbalance in the brain. Once my gut healed, things got back to normal. I slowly started to wean off of the drug.   My goal was to recover, and get off that nasty drug.  And gain weight again. 
I am happy to say that I have recovered, I have gained weight again (slowly)  I have the diet under control, I am off the anti depressant, and I feel really good again. It’s been a journey. I am so grateful I have my life back again!

Kim

Wow, so you think you had it for a long time in your life? The anti-depressants make sense. I was losing my mind for the weeks leading up to the biopsy, and was asked if I wanted anti-depressants numerous times. I was just so worried I would become dependent and never be able to stop them again.

[Azazello]

On 6/14/2023 at 8:13 AM, Ronnie d said:

my journey started with terrible itching that became blisters on my knees. i assumed it was from being on my knees where a septic system line once ran where i was installing and rolling new grass around a new swimming pool (yes, we dug up and moved the line to place a 13,000 gallon in ground pool) i assumed it was either that, or poison oak or ivy.

i did go to my doctor who took a sample and sent it off for celiac and it came back negative.  

i went two aditional years with blisters on fingers elbows,knees,scalp sores that itched, and behind cheeks that itched. this process was terribly uncomfortable with the itching,then blisters, then sores that scabbed over.

i didnt go back to doctor for this predicament but when i needed to see an urgent care for a cough,flu etc....i'd show the 4 doctors i visited over the course of 2 years....the blisters and scabs to no avail. finally the 4th doctor trying to help, decided because of my cough, blisters,etc...he'd give me a super antibiotic called hydroxyflouroquinoline...whoa nellie...turns out i was one of 99000 that was allergic to it and spent a few days having all joints and tendons attacked that left me bed ridden and on crutches and a walker for about a week(after only 6 doses, lol....once we learned the cause we quit with that super antibiotic....i was cured of the tendon and joint issue after about a week...

but continued on with the blisters about another year....i tried everything for a cure, including diet, lotions,etc....

finally in the end i went to a dematologists that took two biopsies.one for celiac, and one for infection......so in the end it was proven that the 1st doctors sample taken for the celiac test was the blister, and didnt have enough skin beside the blister which is where the test yields its results....and 2nd i had staph infection...

my cure was dapsone once a day. within 24 hours the blisters stopped developing....and the staph was cured with a simple antibiotic.

just so everyone reading this knows, the dermatologist told me to take the dapsone until the blisters stop, and to even try skipping a day or so between doses to see just how low i could get the dapsone dosage and still be effective.  her other suggestion was to stop altogether after a few months to see if the dermatitis herpetiformis would go into remission, and it did....

for note you can have celiac without dermatitus herpetaphormis, but all with dermatitus herpetaphormis have celiac.

in ending if you have any of these symptoms do yourself a favor and make an appointment with a dematologist....Br Burgy was a blessing to me.

ronnie

I'm happy to hear everything was sorted out once it was discovered. It's so nice to hear how people's lives completely turn around once they figure it out. So far I don't have skin reactions, but we will if that changes in time. I've heard that it can. 

[Celiac Kim]

8 hours ago, Azazello said:

Wow, so you think you had it for a long time in your life? The anti-depressants make sense. I was losing my mind for the weeks leading up to the biopsy, and was asked if I wanted anti-depressants numerous times. I was just so worried I would become dependent and never be able to stop them again.

I had no problems until the two years before I was diagnosed.  I had the gene and was told that Celiac can lay dormant, and show up at anytime in life. 
I was very afraid to start the anti depressant. I don’t even like to take a Tylenol!  I just made it a goal to wean off after 1 year.  I too like this site. It’s really helpful and has answered a lot of my questions and concerns.  I feel some comfort knowing others can relate to me. 
Kim

[Emma R.]

On 6/4/2023 at 4:10 PM, Azazello said:

Now that I know that I am celiac from the biopsy. And that I discovered this from a few weeks of debilitating fatigue, confusion and nausea as my only symptoms. I want to hear your guys stories on how you came to discover you were a celiac. What was the journey like?

Growing up my best friend had celiac and she's had it since she was 3. So I knew a little bit about it. I now know I knew hardly anything. About a year ago I started having insomnia. I would wake up In the night with my heart racing. I was also very stressed out at the time so I figured it was that. But it was when I had started working at a bakery! Looking back I also would get pain in my joints and i would be severely fatigued. Which both I assumed were from working too much.

In December of 2022 I got a pretty severe cold. I had a double shift at my work so I went in and worked still under the weather from 6:30- 5:30. Driving home I didn't feel good but chalked it up to the cold. And it ended up being one of the scariest moments of my life and what I mark as the beginning of my journey. I started to notice my vision was blurry, but kept driving. Then I started to notice my chest was tight. But again figured I was tired and kept going. Then all of the sudden I had this rush of what I only assume could be hormones maybe? I had to pull over immediately. I was all of the sudden very confused, everything was blurry and I couldn't see, my chest was so tight I was gasping for air, I was shaking violently. I genuinely thought I may be dying. As a 19 year old with no previous health issues I didn't know what was going on.

The episode subsided after being taken home and eating and going to bed. I didn't have any more problems until about two weeks later. I was at a coffee shop and all of the sudden same thing. So I stopped drinking caffeine. And it got better and then same thing again. On the first day of one of my classes I had another episode. I've never been one to struggle with anxiety but these episodes seemed like panic attacks. My anxiety was getting worse and I had one episode (after dinner who would have thought!) and my heart rate would not come down. I was having trouble breathing. I would get the "feeling of doom". So at that point I went to the hospital. 

Of course everything came back as normal. They told me in the ER I was the picture of health. They gave me a sedative told me it was anxiety and sent me home. I scheduled an appointment with my doctor at this point. She went over my labs and discovered I had hypothyroidism and needed to go on medication. And told me once I was regulated I'd be fine. This was in early January. My symptoms continued to get worse. These episodes were getting more and more frequent and would last hours. I didn't feel like myself. I started not being able to sleep. I would wake up in the middle of the night with chest pain, my heart pounding and feeling like adrenaline was rushing through my veins. I went back to my doctor and she set me up with a psychiatrist saying there wasn't anything else going on other than extreme anxiety. 

At that point I started seeing a new doctor since I felt like everyone thought I was crazy. Everyone told me I was fine but I was getting worse. It was getting to the point where I had no energy I stopped going to school, I quit my job, I wouldn't leave my house. I was so afraid that I would have an episode while I was driving again. I had tried so many different things with no improvement. My new doctor gave me an unofficial diagnosis of POTS. Which is an incurable disorder that effects your blood flow amongst other things. She wanted to keep testing to get a definitive answer. I had a heart monitor to watch my heart during these episodes, which came back normal. I had my blood drawn a dozen times over those four months. I was tested for adrenal tumors, Addison's disease, diabetes, hashimotos all negative. My doctor asked if she could test me for celiac on a previous visit and I told her I had no stomach issues (how naïve!!). My friend with celiac had way back in December said she suspected celiac. My doctor eventually had my blood tested and I came back very positive for celiac. 

All of the ER visits, blood drawn, sleepless nights, weight loss and anxiety all made sense. Now almost 4 months out I can say I feel so much better. I finished school and graduated. I have a new job which I like and has nothing to do with flour! And now I have changed my education towards nutrition and dietetics to help people just like me. 

[Azazello]

41 minutes ago, Emma R. said:

Growing up my best friend had celiac and she's had it since she was 3. So I knew a little bit about it. I now know I knew hardly anything. About a year ago I started having insomnia. I would wake up In the night with my heart racing. I was also very stressed out at the time so I figured it was that. But it was when I had started working at a bakery! Looking back I also would get pain in my joints and i would be severely fatigued. Which both I assumed were from working too much.

In December of 2022 I got a pretty severe cold. I had a double shift at my work so I went in and worked still under the weather from 6:30- 5:30. Driving home I didn't feel good but chalked it up to the cold. And it ended up being one of the scariest moments of my life and what I mark as the beginning of my journey. I started to notice my vision was blurry, but kept driving. Then I started to notice my chest was tight. But again figured I was tired and kept going. Then all of the sudden I had this rush of what I only assume could be hormones maybe? I had to pull over immediately. I was all of the sudden very confused, everything was blurry and I couldn't see, my chest was so tight I was gasping for air, I was shaking violently. I genuinely thought I may be dying. As a 19 year old with no previous health issues I didn't know what was going on.

The episode subsided after being taken home and eating and going to bed. I didn't have any more problems until about two weeks later. I was at a coffee shop and all of the sudden same thing. So I stopped drinking caffeine. And it got better and then same thing again. On the first day of one of my classes I had another episode. I've never been one to struggle with anxiety but these episodes seemed like panic attacks. My anxiety was getting worse and I had one episode (after dinner who would have thought!) and my heart rate would not come down. I was having trouble breathing. I would get the "feeling of doom". So at that point I went to the hospital. 

Of course everything came back as normal. They told me in the ER I was the picture of health. They gave me a sedative told me it was anxiety and sent me home. I scheduled an appointment with my doctor at this point. She went over my labs and discovered I had hypothyroidism and needed to go on medication. And told me once I was regulated I'd be fine. This was in early January. My symptoms continued to get worse. These episodes were getting more and more frequent and would last hours. I didn't feel like myself. I started not being able to sleep. I would wake up in the middle of the night with chest pain, my heart pounding and feeling like adrenaline was rushing through my veins. I went back to my doctor and she set me up with a psychiatrist saying there wasn't anything else going on other than extreme anxiety. 

At that point I started seeing a new doctor since I felt like everyone thought I was crazy. Everyone told me I was fine but I was getting worse. It was getting to the point where I had no energy I stopped going to school, I quit my job, I wouldn't leave my house. I was so afraid that I would have an episode while I was driving again. I had tried so many different things with no improvement. My new doctor gave me an unofficial diagnosis of POTS. Which is an incurable disorder that effects your blood flow amongst other things. She wanted to keep testing to get a definitive answer. I had a heart monitor to watch my heart during these episodes, which came back normal. I had my blood drawn a dozen times over those four months. I was tested for adrenal tumors, Addison's disease, diabetes, hashimotos all negative. My doctor asked if she could test me for celiac on a previous visit and I told her I had no stomach issues (how naïve!!). My friend with celiac had way back in December said she suspected celiac. My doctor eventually had my blood tested and I came back very positive for celiac. 

All of the ER visits, blood drawn, sleepless nights, weight loss and anxiety all made sense. Now almost 4 months out I can say I feel so much better. I finished school and graduated. I have a new job which I like and has nothing to do with flour! And now I have changed my education towards nutrition and dietetics to help people just like me. 

Did your thyroid return to normal after going gluten free? Damn, I think one of the hardest part about hearing people being misdiagnosed is that they're treated as crazy or having some mental disorder.

[knitty kitty]

There's a link between anxiety and panic attacks and Thiamine deficiency.  I had panic attacks like you describe.  My doctors sent me on the same mental health runaround.  It's THIAMINE deficiency.

Thiamine is needed to control the fight or flight response.  In Thiamine deficiency, that response can be activated with little provocation.  

"For anxiety, thiamine has been used successfully at doses of 250 mg/day to treat patients with anxiety disorders, including symptoms manifesting as chronic fatigue, insomnia, nightmares, anorexia, nausea and vomiting, diarrhea or constipation, chest and abdominal pain, depression, aggression, headache, diaphoresis, and fevers of unknown origin. Among over 200 subjects, successful responders had deficient RBC transketolase which normalized in 73% of the subjects and led to disappearance or great clinical improvement in most of the symptoms."

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

 

POTS is another disease with links to thiamine deficiency.  Thyroid problems are often linked to thiamine deficiency.

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

And...

Vitamin B1 deficiency in patients with postural tachycardia syndrome (POTS)

https://pubmed.ncbi.nlm.nih.gov/28531358/

And...

https://www.standinguptopots.org/nutritionalimbalances

Forgot some...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Edited June 30, 2023 by knitty kitty
Add more information

[Stephthinksbig]

      Hi, I'm new. This is a fascinating discussion, and I'm enjoying reading all of your origin stories around finding out you were intolerant of gluten. I remember having some stomach pain and bloating and bathroom problems from when I was a little kid. My parents were farmers and they were never ever sick. We were not allowed to be sick or stay home from school ever. I looked very healthy and strong like them and so they thought I was fine. In 2nd grade at school I got permission to go to the restroom, but walking back to class I realized I had to go again right away. I knew if I went back to the classroom the teacher would never let me leave again, and that would mean a social catastrophe. So I just ran back to the bathroom to go again and then sat outside until the class was over. I didn't trust that adults would ever believe me or help me with a problem since my parents didn't. So I just tried to handle it myself.

      As the years went on, my weight would yo-yo and I continued to get stomach aches, bloating, diarrhea, and I took too many antibiotics. I became a person who craved bread and sweets. I also became anorexic for a while. These terrible choices led to serious Candida which blocks absorption of Thiamine. I recently learned that low Thiamine can trigger autoimmune diseases to express. I would get what I called emergency bathroom problems. It was unpredictable and sometimes I didn't make it.

     I started getting very extreme sugar cravings that were bizarre and uncontrollable. I had been a pretty healthy and fit triathlete with unlimited energy, but now I was eating a giant bag of M&Ms for dinner. I realized I had an eating disorder. At the age of 30 I went to the Julia Ross clinic in San Francisco (Mill Valley) and she gave me amino acids like 5-HTP to help balance my brain chemistry and curb the extreme sugar cravings.

She said I probably have Celiac disease. Wheat and bread was my absolute favorite thing to eat. It gave me a soothing and blissful high. I joked that it was my heroin. I didn't know then that Celiacs can have an endorphin rush from eating gluten. She referred me to a doctor who helped me determine that I had the gene for Celiac and he put me on an elimination diet. After avoiding gluten I found my reactions to it had intensified. He told me you have to go 100% gluten free from now on. I was crushed. My two female cousins have it too now.

I am highly reactive so even 20 ppm of gluten which is the legal limit for a food to be considered and labeled "gluten free" is enough to make me react. I bet some of you too may have that kind of reaction. So I've had some accidents because of that. Also I've found that I have been reacting to high histamine foods for years, and now it's ratcheting up at times as well. So the rules of the game continue to evolve.

Being able to offer each other information and support in a forum such as this one is very helpful, and I am grateful to you all for sharing your stories. They are all complex and challenging journeys that helped us all figure out what was causing the difficult symptoms we were dealing with. I'm sorry for all the suffering that you had to endure even just to simply get an accurate diagnosis. It shouldn't have been that hard for us. There is not enough awareness still, and for a variety of reasons, more and more people are getting the diagnosis. Best of luck to all of you in your continuing journey toward better gut health and wellness.

[Stephthinksbig]

     Also, I got severe Lyme disease right around the same time as my Celiac diagnosis, and that came with many truly bizarre symptoms that were not properly diagnosed for 12 years. But one of the first was extreme nerve pain, and then my thyroid completely stopped working. I gained 40 pounds within about a month without changing my diet or exercise. My non-stop energy and vim and vigor were gone with a TSH of 10 (very bad), and I have been on a high dose of thyroid medication ever since. But even after going on a 100% gluten-free diet for the last 20 years and trying many different approaches to eating healthy meals and exercising, I have not yet been able to regain the physique or energy that I had before those three health crises converged to change my quality of life. But every day is another chance to learn something new that may help, and that is why I am happy to be here to learn from all of you. Thank you for sharing your stories!

[Ronnie d]

3 hours ago, Stephthinksbig said:

     Also, I got severe Lyme disease right around the same time as my Celiac diagnosis, and that came with many truly bizarre symptoms that were not properly diagnosed for 12 years. But one of the first was extreme nerve pain, and then my thyroid completely stopped working. I gained 40 pounds within about a month without changing my diet or exercise. My non-stop energy and vim and vigor were gone with a TSH of 10 (very bad), and I have been on a high dose of thyroid medication ever since. But even after going on a 100% gluten-free diet for the last 20 years and trying many different approaches to eating healthy meals and exercising, I have not yet been able to regain the physique or energy that I had before those three health crises converged to change my quality of life. But every day is another chance to learn something new that may help, and that is why I am happy to be here to learn from all of you. Thank you for sharing your stories!

have your doctor check your viamin b levels...

[Azazello]

17 hours ago, Stephthinksbig said:

     Also, I got severe Lyme disease right around the same time as my Celiac diagnosis, and that came with many truly bizarre symptoms that were not properly diagnosed for 12 years. But one of the first was extreme nerve pain, and then my thyroid completely stopped working. I gained 40 pounds within about a month without changing my diet or exercise. My non-stop energy and vim and vigor were gone with a TSH of 10 (very bad), and I have been on a high dose of thyroid medication ever since. But even after going on a 100% gluten-free diet for the last 20 years and trying many different approaches to eating healthy meals and exercising, I have not yet been able to regain the physique or energy that I had before those three health crises converged to change my quality of life. But every day is another chance to learn something new that may help, and that is why I am happy to be here to learn from all of you. Thank you for sharing your stories!

Wow you're strong having gone through all that. I don't think I'd be tough enough to survive through anything else piled on, especially the thyroid stuff. Without energy, everything is far too overwhelming for me.