• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
JoyMurphy

What Happened To Me? Could Celiacs Have Caused All Of This?

Rate this topic

Recommended Posts

Sometimes, I am surprised I am still alive. I don't understand what happened to me.

My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!

Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.

My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck

I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?

I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.

Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.

My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.

I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.

I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.

Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????

What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.

After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.

I have missed my spring and my summer. What happened to me?

The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.

I just want to cry. Please help me

Joy

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Sometimes, I am surprised I am still alive. I don't understand what happened to me.

My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!

Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.

My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck

I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?

I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.

Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.

My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.

I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.

I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.

Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????

What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.

After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.

I have missed my spring and my summer. What happened to me?

The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.

I just want to cry. Please help me

Joy

Hi sweety. I feel much empathy for all that you have endured! I was wondering whether you could see a specialist and find someone who will put you on an immune system surpressor if that is safe for you. As I'll as you are it seems you need something to counteract you immune system for a while. Don't give up! If you try your best to remain gluten free I am sure it will get better. As your horribly damaged gut (sounds like yours is one of the worst I have heard), your leaky gut will begin to heal itself and many of those allergies may just disappear. It may take a while but things will change I am sure. Many people on here were very I'll as you have been and claim they almost died. Please do not worry about what others think. I did for a while but I realized when i felt better, it was very evident I was a different person off gluten.

I, myself, was treated like my illness was in my head, simply because they couldn't figure out what was wrong. I was only 17 when I had my first trip to the ER and was treated like I was too young to be ill. I imagine i could have avoided a lot of pain and frustration if I had been diagnosed earlier. I can't imagine how bad it must be to have suffered so long with no diagnosis. There is hope!

Perhaps if your family doesn't understand delayed reactions you can find some similar posts on here about delayed and prolonged reactions, both.

Share this post


Link to post
Share on other sites

Your post got me emotional :(

I know what it's like. The doctor thinks you're looney, but you're not. You are SICK.

I wasn't as bad as you, but my doctor thought I was anorexic and depressed and everything thrown in. No, I was sick...I think a lot of doctors just want to keep us going for a while. It's ridiculous, NO ONE is too young to be ill.

Share this post


Link to post
Share on other sites

I too have lost my Spring and Summer - it sucks!

I know all to well how hard it is to have your life highjacked by a malfunctioning body - the only thing I can suggest is be very kind to yourself, you have been through a lot -- you may still be healing from surgery and it often takes a long time to heal from undiagnosed celiac disease.

Take it an hour at a time - hang in there!

Share this post


Link to post
Share on other sites

A lot of us are on pretty restricted diets, I'm still trying to figure out what I can eat due to being sensitive to msg, sulfites and soy as well as gluten. Eat the few foods you can eat, until you get some healing. Then you might want to look at something like the SCD or the 'fail-safe' diet. (SCD = specific carbohydrate diet). Due to malabsorption of nutrients, celiac can lead to all sorts of issues, as you found out. I hope you're on the mend soon, and you'll find lots of support here too.

Share this post


Link to post
Share on other sites
Ads by Google:


Sometimes when you've been undiagnosed for a long time, your body ends up suffering from many nutritional deficiencies--and those deficiencies can cause all (and more) of the symptoms that you're experiencing. You might try adding magnesium, manganese, and a B vitamin complex. Magnesium runs all of the systems in your body, and when you're deficient, your symptoms can be all over the place. Manganese deficiency can cause painful, weak muscles. A deficiency in the B vitamins can cause many symptoms, but they can also be responsible for a number of neurological symptoms.

Give it time....eat well....and take the above supplements. You'll start feeling better soon!

Share this post


Link to post
Share on other sites

Oh gee... :( You've had an awful awful time of it. (((HUGS)) How unfair. :unsure: We know it's not in your head. It's just your doctors' way to reassure themselves when they can't solve your problem.

I hope you start seeing relief soon after eliminating the common problem causing foods and taking lots of high quality vitamins (sublingual or injections might be best if a nutritionist agrees).

Hang in there. You probably have a tonne of damage done and it will take quite a while to heal, but it will heal.

Best wishes!

Share this post


Link to post
Share on other sites

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

  • Upvote 1

Share this post


Link to post
Share on other sites

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

I feel so sad reading all of these and seeing how so many people have needlessly suffered due to so many uneducated doctors who do not understand!

I think the really really important thing is to not fall out with your body. It's difficult and I often find myself in tears of anger and frustration, blaming my body and hating it! When really that's no help at all.

Also, talking to people who understand. The confirmation that I WASN'T crazy was such a relief. Being a young woman, every doctor I saw blamed my periods! (Which were agonising, sure) But they also accused me of being anorexic (once in front of a few medical student's watching, very embarrassing and unsympathetic!) I've been told I'm depressed, brushed aside with IBS, doctor's have laughed saying "If I didn't know any better I'd say you were pregnant!" Great thing to say to a scared, alone, 16 year old girl! But the worst of all was being told I was FINE.

Since when was chronic constipation, fatigue, brain fog, memory loss, reoccurring mouth ulcers, constant nausea and painful vomiting, fainting and general weakness fine!?

You need to talk about your symptoms, to people who understand, and have patience with yourself and your body. Remember that you WILL get better.

  • Upvote 1

Share this post


Link to post
Share on other sites

Hang in there, I know you can! Don't let people, especially doctors, get to you! No one really knows how badly you feel except for you, so next time a doctor tells you 'you're fine', insist that they just keep looking for other reasons why you're not fine. Your family loves and cares for you, even if they don't understand. It's unfortunately perfectly normal for celiacs to have reactions to gluten last for days or much longer. That gluten you ate on Friday might have consequences that last months.

I can't imagine how awful it must be to be so sick, having a pancreas tumor as well as celiac disease symptoms at the same time, but keep on being very, very careful with what you eat. Don't you dare eat anything that you're not 100% certain is gluten free! (FYI, I've seen black pepper that has wheat as an indredient, so double check yours.) And don't risk other foods that you know don't agree with you either. Its bland and its boring but healthy and boring is better than tasty and sick. And yes, all this stuff could be celiac disease bothering you, even with your tumor gone. Nutritional deficiencies and inflammation can cause all sorts of weird and awful problems.

I really hope you will start to feel better soon, and I hope that your surgery went alright and that there's no further complications with it. And it's alright to cry, I do and I'm not half as sick as you.

Share this post


Link to post
Share on other sites


Ads by Google:


I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

I have had the same problems, my knee would buckle out for no reason, fingers and toes would tingle and go numb. STUTTTERING!!!!!! All the time!!!!!!!! Can't concentrate, have lost my witty comebacks......I used to be pretty funny (well, at least I thought so)... My brain would shutter and flutter. I had weird optical illusions like my daughters being out of focus and shaking up and down like on the old tvs with rabbit ears that needed to be adjusted. Conversations were so embarrassing, I would sometimes stop and cry. It is so nice to hear I am not alone. The only ones that get it are other celiacs. I was so glad to hear your story. I am so sad to hear it as well. I don't know how you were able to work! I couldn't even focus to read a book. Thank you for making me feel ok.

Share this post


Link to post
Share on other sites

I tried to write a response, and I lost it....

I wanted to write to allof you, but I don't have that much stamina. You have all moved me to tears. It is nice not to feel so alone. I have felt so isolated. Laying on my couch for months, not being able to move, watching my friends drive by, water their plants, and no one stopped to visit. They all thought I was faking it, or it was in my head, i was depressed, stressed or unhappy in my marraige. I think even my husband believed that it was stress. He never denounced it. My dad never doubted me. He knew there was something wrong.

One friend texted me when she heard the diagnosis, " I heard the good news!!". I said, " what was that? That I have celiac disease? That I have the same rare tumor Steve jobs had? Or that im not just stressed??"

The next week my cat had to be put to sleep, it was sick and old, and I will spare the gross details. This friend responded with so much concern over the dead cat, and asked " what really happened?". I told her, I'm not sure, I think it was stress!"

The only people that got it were my friends that were nurses and those with celiacs.

I am so glad to be here.

I t amazes me how long a glistening can last. I was bad the last few days, today is up and down. It's hard for others to understand it. I know bc I used to be one of those others who thought, " what's the big deal.". Oh, I get it now, and I am so ashamed I ever thought that before.

Thank you all

  • Upvote 1

Share this post


Link to post
Share on other sites

I cried like a baby...still am truth be told.

I know, firsthand, what you feel... I'm there...

I've been "dying" for the last few years. Can't tell you how many times I've said, "I probably won't 'be here'"..."I just want...blah blah blah...while I still can...", etc, etc. And, of course, I'd get the obligatory "you'll be fine"..."you're not going to die"...yada yada yada.

I would just want to SCREAM at people (more often than not, I didn't scream, though...),"I'm not looking for sympathy, you morons"...or the rest of that crap! I really think I'm dying here! Nobody really "got it". How could they, really? All I really wanted was to make sure my son was going to be "okay". I wasn't looking for a pity party. In fact, it wasn't the fact that I felt like I was dying that made me want to scream...it was all the people who were poo-pooing me...not helping me...making me feel like a crazy person. Even those who were watching me deteriorate a little more every day.

When you are that sick...getting worse EVERY DAMN DAY...and NO ONE can figure out what's wrong with you? When you can't do the simplest things anymore? How can you not feel like you're dying???

While I'm still sick, I have found HOPE that I could get better.

With all that commiserative-ranting aside...I agree about, perhaps, looking into an immune suppressor. I believe you need to mitigate some of your autoimmune responses while you heal. You're too sick to wait

hat out, imo.

We are here for you...and we "get it"...

  • Upvote 1

Share this post


Link to post
Share on other sites

I've heard a lot of mention of immune suppressors. What exactly do they do? How will they help me? I'm willing to do anything.

Share this post


Link to post
Share on other sites

Joy...

First concern would be where you are in your recovery from the tumor... Your doc can advise you on that.

My thinking (and I'm certainly not a doctor...just someone who went the immuno-suppressant road for my supposed RA (rheumatoid arthritis) for the past 4 years...is that you are possibly (probably?) having such a monsoon of autoimmune symptoms that your body (and let's face it, emotions) just can't handle it all right now. And, it will take time for you to heal your body (celiac). It's not going to happen quickly, from what I've learned...the more severe/progressed we are, the harder/longer it takes... You don't just have to remove the gluten...you have to heal your gut...but, the most important piece for both of us is that our bodies "get the signal" and stops attacking itself. Get our immune systems to relax... And, this will take time.

So, I'm just thinking that an immune suppressor (humira, enbrel, etc) might help take some of your autoimmune symptoms down a notch (or 20) while you heal... Just a thought...I think it's something you can at least talk over with your doc... :)

Share this post


Link to post
Share on other sites

What jumped out at me, Joy, was the statement you made about losing 1 pound per day. That was me, at the end, and I ended up being diagnosed when I hit 97 pounds. So, I really can relate to this and how scary it is. Being patient is of the utmost importance and it may very well take a year before you notice marked improvement but it will happen. I do not advocate taking any kind of immune-suppresant but then again, I am not in your shoes or anyone else's on that. You have to do what's best for you but recovery can and will happen, long term. There is no magic pill for recovery with Celiac, unfortunately.

And don't worry about what other people think! I know it hurts when family become doubtful about how careful you have to be....I have received my share of eye rolls over CC issues, believe me! Screw 'em! Concentrate on you!

Share this post


Link to post
Share on other sites

I've heard a lot of mention of immune suppressors. What exactly do they do? How will they help me? I'm willing to do anything.

They essentially just block the subjects immune system. Care has to be given because it also means it can lower your ability to fight common colds and germs and whatever else. Stopping your immune system from beating itself up is pretty important. I think it is much more of a threat than a common cold.

Here is a link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660817/

It has a good example and talks about celiac crisis. I skimmed a bit to get to the useful parts. It may be helpful to you to see sometimes it can be necessary.

Share this post


Link to post
Share on other sites

They essentially just block the subjects immune system. Care has to be given because it also means it can lower your ability to fight common colds and germs and whatever else. Stopping your immune system from beating itself up is pretty important. I think it is much more of a threat than a common cold.

Here is a link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660817/

It has a good example and talks about celiac crisis. I skimmed a bit to get to the useful parts. It may be helpful to you to see sometimes it can be necessary.

Excellent...relevant and informative! :)

Share this post


Link to post
Share on other sites

Wow. I have to tell you that you are not alone. Your story is so close to mine in details and time line.... It refreshed my memory of all I felt and have been through, and made my heart ache!

I couldn't hold a coherent conversation, didn't have a logical thought. The BM looking like urine, coming more often than peeing. The lymph nodes... mine came with boils, the poison trying to get out of my body. Hair and lashes falling out in clumps. Could only stand or be awake long enough to make another trip to the bathroom and then I was asleep again. Bloating and heartburn. Feeling like you are losing your mind!!!!!!

I, too, am amazed each day I am alive. I feel glorious about it! Even if I have a bad day, I find euphoria in the fact I am still here.

I am a person who doesn't cry. I take what life gives me and meets it head on. I cried when the medical tests done all came back good! I never was one to go to the doctor, so here I was, so sick and weak, in the hands of medical professionals with trust they would help me, I'm feeling as if I was dying, and they tell me ALL IS WELL!

My husband freaked out to see the tears because he never saw me so weak and defenseless. I needed to know my enemy so I could fight it. The tests showed no enemy.

Dr suggested a trip to MN Mayo. It would take 3 months to get in, he said. Go home, wait, and Don't change anything in your life so that symptoms remain the same. I went home thinking I would be dead in 3 months. I had the change something, change everything! I wanted to live!

That is what I did. I found I could eat boiled chicken, green beans and eggs with no reaction. That is all I ate, until I began to get stronger and my mind cleared so I could actually think logically. No it wasn't nutritionally balanced, but who knew how much food was actually being absorbed anyhow? My body was starving, but in my case I was 'overweight'. I knew I needed to calm and heal my digestive system (thanks to this site), I had to stop the reactions and calm the inflammation before I could heal.

I studied here, finding others who had already suffered and were full of compassion and good advice. One by one I added a food to my diet, and recorded the reaction and my weight in a diary. Any changes in my body over a couple days and I knew whether my body was going to allow that food.

I didn't have testing for food insensitivities. I did it myself. My body told me with a vengeance what it could not tolerate.

In about 3 months, I quit trying new foods. It was a personal choice. I do not eat a well balanced diet yet, but I also quit having setbacks in my healing. Each new food was a risk of setback to my healing. Each new supplement was a risk my body would not accept it. My reactions are not just neurological, but physical, and mental... and also will shoot the scales up by 5 lbs overnight with an inflammatory reaction.

Its been 6 months and I am so much better over what I have been in years. The lymph nodes still swell, but they do not stay swelled for months on end. I have boils still, but I embrace them now, knowing its a way my body uses trying to get the remaining poisons out of me to get me better. I have lost 20 lbs of fluid off my body, so I know my body is less inflamed than it was. My lashes are growing back. Most days I can think so clearly I almost scare myself with the logical, coherent thoughts!!!

I am not at my full health yet, I know it! But I also know the human body will repair most damage given enough time and chance to do so. As much as it bugged me to read here over and over PATIENCE is the key, it is true.

I suddenly live in fear. I have never feared much in my life. But I live in fear of gluten/soy/corn/dairy. I live as though it will kill me. Maybe that is drastic, but its how I live. I prepare my own 'fresh only' food, I will NOT eat what someone else has prepared! I cannot chance it. I don't think its someone else's responsibility to have to be so careful in food prep. It is hassle enough for me to have to do it. But I have never once been accidentally glutened.

I never looked at my diet sadly thinking about what I can't have. I look at it that I am thankful I have found a few items I CAN safely eat and never have reactions to. I know I get more food choices than some people here.

I truly do believe I dodged a bullet and have a second chance at life. I look at it as a blessing, not a curse. I honestly think had I gone through the medical procedures and testings and let a dr dictate my care, i would be dead or nearly there right now. I WAS offered treatment, a bunch of medicines. I declined that as sick as I was. I am thankful I did!!! Because I know I would still be poisoning my body AND be taking a bunch of meds to try to alleviate the symptoms. It scares me to think where I would be if I had done that.

I no longer smooch the faces of my grand babies, for fear of a gluten crumb getting on my lips. I kiss the tops of their heads. I don't let them run around with a cookie in their hand, for fear they will gluten the arm of a chair that I might later touch.

I act paranoid wiping their hands and faces. The exact opposite of the free spirit grandma used to be, of letting the kids run amok and not worrying about finger prints or crumbs in the house.

I want to warn you, to make sure you go to just sea salt. I and others have found that processed salt can cause a reaction. Who would have thought?

Continue to do everything with your health in mind. Eat the few things you know you don't react to, rest when you need it, take as good of care of yourself as you can. Trust that as your body heals, you will get better and stronger. But the body was VERY damaged. It will first need to adjust to not being poisoned, then it will begin to heal. It IS a slow process, and wanting to feel better NOW can be frustrating and depressing! I know my diary was a saving grace many times. I can look back and see the progress and when it began. Sometimes it hadn't been as long as I thought it had. Having it in the diary helps me immensely.

Trust that when you continue to do what your body needs, it will respond and reward you!

Some days I look in the mirror and see how much I aged in an 8 month period before my crash, and I don't know who she is. In 6 months healing time I don't resemble the woman who I was. I am looking younger every day, and acting it. My health is improving and my mind is amazingly clear. I keep dreaming about a year from now.... who will I be, what will I look like. Its exciting for me!

I know I hated to read it, but its the best advice out there.... consistency and patience. You didn't get here overnight, and it won't go away overnight.... but it will continue to get better.

Hugs to you !!!

Share this post


Link to post
Share on other sites

Wow, RuskitD... Very compelling...thanks so much for sharing that! Truly great advice...

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Who's Online   15 Members, 1 Anonymous, 409 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

  • Forum Statistics

    • Total Topics
      109,734
    • Total Posts
      947,373
  • Member Statistics

    • Total Members
      72,206
    • Most Online
      3,093

    Newest Member
    Grace Tolerton
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes you should get the full panel done. Maybe ask for a referral to a GI doctor since this has been going on for over 2 weeks. It might also be a good idea to get a stool sample tested for food borne illness if they haven't done it already.  I had salmonella for over 2 weeks once before the doctor tested. Doc kept insisting it was just IBS. Got an apology and some antibiotics.
    • Very true, I think I have taken steps to think that a upset stomach is normal , many times I would play soccer with discomfort or go on a date being extremely bloated but I thought it's normal for people with IBS! I have been eating a little bit of gluten for the past couple days. I feel a lot more tired than a few days ago and one day I slept 12 hours!  When I went gluten free for 8 days , I felt like my energy level went up, I felt better and even my sex drive sky rocketed. Not sure if that 8 days really made a difference or it's just psychological or both. I read a lot online about this condition and the more I read the scarier it gets. I guess my social life will never be the same. I can't travel freely anymore :-( It seems this a very serious condition, but what I don't understand is that most people with celiac are never diagnosed so how do they live their entire life not knowing with such severe consequences Right now I really look forward to going back to a gluten free diet, my endoscopy is on Friday.
    • I’ve been having diarrhea and headaches, daily for 18 days now. I have had many of the common celiac symptoms for most of my life, as well.  I asked the doc to check for celiac. He ordered the tTG-IgA and nothing else. It finally came back and my results for 3.48 (which according to the <20 range for my test, is obviously a very strong negative). I’ve read that ttg could give a false negative of you are IgA deficient.  I don’t want to annoy the doc and make him think I’m the queen of the internet, lol, but should I push for a full celiac panel and remind him that the ttg alone could give a false negative?  Did any of you get a negative tTG-IgA, but actually still have celiac? Also, I should mention on my blood work, my hemoglobin is fine and not showing anemia (not sure if that’s what causes the immunoglobulin A deficiency or not.. I don’t know enough about that deficiency.)
    • I don't think that's harsh at all. There are real concerns about cross contamination in the kitchens with these "gluten-free pizzas". Even Domino's has a warning.  While the Gluten Free Crust is certified to be free of gluten, the pizzas made with the Gluten Free Crust use the same ingredients and utensils as all of our other pizzas. Read the upper left big red box which says: Domino's DOES NOT recommend this pizza for customers with celiac disease. https://www.dominos.com/en/pages/content/customer-service/glutenfreecrust.jsp
    • Hello, I can tell you a couple of things, the first of which is based on personal experience. I sometimes have an unsightly rough patch on my nose that I have been struggling with for a number of years. If I bring up the topic at the dermatologist, they tend to put me on either an anti-fungal or a steroid cream, both of which after a while I stop using. The steroid of course does "work." My skin clears up. And now with the anti-fungal, this was more interesting. It seems that whatever it was on my nose did kind of clear up, but then a patch of...something (I don't know what) would crop up just outside of the area where I had put the anti-fungal cream. That made me laugh. Next, I assumed it might have been caused by not washing my hair enough (I have dandruff and used Head & Shoulders) so I'd experiment and it would (sort of) seem that my nose was not as bad on the day after I washed my hair. But the most dramatic improvement by far has occurred since I switched from Head & Shoulders to a bar shampoo (which I do in order to get organic ingredients but more important to cut down on plastic waste). Rough patch is simply gone with no trace of it. The older I get the more I am tending to use personal care products that try very hard to be organic. Second, I read the adverse effects of dapsone, and see that exfoliative dermatitis is one of them, as is photosensitivity. Have you ruled out adverse effects? Plumbago
  • Blog Entries

  • Upcoming Events