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The Evil Gluten - My Story And Road To Recovery

eluvsphish

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eluvsphish Newbie
eluvsphish
Posted

I will never forget the words my mother told me when I was seven years old "you have to leave the family reunion so we can get you to the hospital." "Hospital? Why I do I need to go? I feel fine and I want to stay in Kentucky with my family!" But, I wasn't fine. I had tonsils the size of golf balls and a diagnosis of mononucleosis. And this was only the beginning of my saga of illness that has lasted all throughout my entire life.

I am the only person I know who has had mono more than once. I got it once at 7 and again at 14 and 21. I ended up missing the entire last month of my freshman year of high school because I was so sick. That time I had mono, strep, and pneumonia at the same time. And wow! Strep throat? Strep throat became so common that I didn't even have to tell the doctor my symptoms anymore. I remember mom just saying "I think it's Strep again." And they would stick that terrible cotton death down my throat again and say "it's positive" every time. By the time I had my tonsils removed at 22, they were so filled with pus that it splattered all over the back of my throat when they cut into them. The doctors also said there was a terrible death-like stench that came from them at first slice.

During my junior year in high school, I became a "freak of nature" as some people have lovingly called me all the way up until a few months ago. I would get hives all over my body. They would come and go at random times too. I blamed everything from cold weather, to alcohol, to hormones, to tight socks and pants, and stress. They would appear mostly on my arms and legs, but sometimes they would be on my stomach area too. I remember that on a few occasions, I had to go to the ER to have steroid injections because my "Stay Puft Marshmallow hands" would swell so bad that I thought they would literally pop. I also remember being able to scratch my skin and a hive would appear. But the allergist told me I was only allergic to cats, dogs, and dust mites. A rheumatologist said I was fine too, although at first, she thought I had Lupus!

Another issue I have faced in life is that of every woman's fear - infertility. Although I am now divorced from the husband I had the infertility with, I know now that I cannot blame it on the stressful relationship. There has been a deeper issue at work here all along. But, nothing can describe the pain and agony of wanting a child so badly that you can taste it. And, nothing can be more perplexing than going under all of the fertility testing possible, only to be told that it's "undiagnosed infertility." In other words, everything is working correctly

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eluvsphish Newbie
eluvsphish
Posted
  • Author

I should add that I wrote this for a non-celiac website, but I am so happy to post it here! I would love any feedback, as I just received my test results this week!

chasbari Apprentice
chasbari
Posted

A lot of familiar sounding things in there. You have the answers you need. Your reaction to your change in diet is better than any medical opinion. Be strong, be well and stick to your gut instinct whenever you run into doubters. Glad to hear that things are turning out well.. for you and your son. Living in the land of knowing is such good place to be.

eluvsphish Newbie
eluvsphish
Posted
  • Author

A lot of familiar sounding things in there. You have the answers you need. Your reaction to your change in diet is better than any medical opinion. Be strong, be well and stick to your gut instinct whenever you run into doubters. Glad to hear that things are turning out well.. for you and your son. Living in the land of knowing is such good place to be.

Thank you SO much! It feels wonderful being a part of this forum now where there are tons of people who understand exactly what I am going through.....especially when some members of my family are still in denial even after I got my results.

AVR1962 Collaborator
AVR1962
Posted

Listening to others who have been down this road I always find it interesting, espcially linking the symptoms. I had a bad case of mono when I was 6, again while I was still in grade school. I also had tonsilitis rumorous times....that finally subsided before ther age of 40, I guess it's rare after that point. Same roller coaster with depression.....went to groups therapy sessions, private therapy and have been on a few different anti-depressants. All of this I had not connected before and find it very interesting.

Recently I was at a family reunion and had been told one of my uncles was having trouble healthwise so I started talking to him. He is seeing a homeopathic doc who took him off glutens and dairy.....his thyroid is messed up and doc beleives he's had metal poisoning.

Not only are 2 of my daughters gluten and dairy intolerant but in our family we have had members diagnosed with diabetes, thyroid problems, stomach issues, cancers including stomach, heart disease, skin disorders, and schizophrenia. I want to tell the whole family to get off glutens as I feel this is killing them but when I tell them my story they look at me like I am weird.

I am just so thankful to be gluten free. I was real real sick before I figured out it was glutens. I have only been off glutens since April and slowly one by one all my symptoms have gone away. Crazy thing about this is docs could not figure out what was wrong. I had so many blood tests and went to so many specialists. Docs did not even meantion to me that my vitamins and minerals were low. I saw it with my own eyes when I requested the results of my lab work. I started taking the vitamins that I was defiencient in.....my muscle spasms and twitched finally stopped after I continually put potassium into my system. I was just floored.

In my case, it was my adult daughters who saw I was so sick and suggested I just try going off glutens. I figured I had nothing to lose, not thinking this was my problem and BINGO. Went to gastro to follow up, told them what I had doing and then they decided they wnated me to go back on glutens for 2 months so they could test me for Celiac. I did but got so sick (dizzy, burning stomach even on prescribed meds, gas, bloating, memory loss, tired- sleeping 10 hours a night, blurred vision, messed up depth perception) I could hardly function. I made it to day 12. Doc told me without following thru the 2 months they could not help me with symptoms and if I were to go back in their office with complaints related they would want me to go on glutens again to try and test me. I have not been back. It took longer to recover to time being back on glutens......I actually felt they could have killed me had a stayed on.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you SO much! It feels wonderful being a part of this forum now where there are tons of people who understand exactly what I am going through.....especially when some members of my family are still in denial even after I got my results.

Glad to hear you finally found the answer for both yourself and your son. Also glad you found us. Thanks for sharing your story. We have heard many similiar ones. I have to wonder when doctors are going to start screening for celiac before folks have their lives so severely impacted. Other countries do screen routinely and they have much healthier populations. We deserve the same right to a long, healthy and happy life.

chasbari Apprentice
chasbari
Posted

Listening to others who have been down this road I always find it interesting, espcially linking the symptoms. I had a bad case of mono when I was 6, again while I was still in grade school. I also had tonsilitis rumorous times....that finally subsided before ther age of 40, I guess it's rare after that point. Same roller coaster with depression.....went to groups therapy sessions, private therapy and have been on a few different anti-depressants. All of this I had not connected before and find it very interesting.

Recently I was at a family reunion and had been told one of my uncles was having trouble healthwise so I started talking to him. He is seeing a homeopathic doc who took him off glutens and dairy.....his thyroid is messed up and doc beleives he's had metal poisoning.

Not only are 2 of my daughters gluten and dairy intolerant but in our family we have had members diagnosed with diabetes, thyroid problems, stomach issues, cancers including stomach, heart disease, skin disorders, and schizophrenia. I want to tell the whole family to get off glutens as I feel this is killing them but when I tell them my story they look at me like I am weird.

I am just so thankful to be gluten free. I was real real sick before I figured out it was glutens. I have only been off glutens since April and slowly one by one all my symptoms have gone away. Crazy thing about this is docs could not figure out what was wrong. I had so many blood tests and went to so many specialists. Docs did not even meantion to me that my vitamins and minerals were low. I saw it with my own eyes when I requested the results of my lab work. I started taking the vitamins that I was defiencient in.....my muscle spasms and twitched finally stopped after I continually put potassium into my system. I was just floored.

In my case, it was my adult daughters who saw I was so sick and suggested I just try going off glutens. I figured I had nothing to lose, not thinking this was my problem and BINGO. Went to gastro to follow up, told them what I had doing and then they decided they wnated me to go back on glutens for 2 months so they could test me for Celiac. I did but got so sick (dizzy, burning stomach even on prescribed meds, gas, bloating, memory loss, tired- sleeping 10 hours a night, blurred vision, messed up depth perception) I could hardly function. I made it to day 12. Doc told me without following thru the 2 months they could not help me with symptoms and if I were to go back in their office with complaints related they would want me to go on glutens again to try and test me. I have not been back. It took longer to recover to time being back on glutens......I actually felt they could have killed me had a stayed on.

The insanity of the medical community. A known poison.. so, what do they want you to do? Take it so they can figure out whether it is causing a problem when, in fact, you have already done a self diagnosis. And they still can't figure it out and they want YOU to go back to destroying yourself so they can "help you???" Go find another doctor. Or, only use the doctor for what is absolutely essential and not related to your celiac care. There is much messed up in the medical community.. don't let it mess you up even more. Go keep healing yourself. Glad you have gotten this figured out! There was a great interview the other day on Super Human Radio with Dr. Andry He teaches at IU Med sChool, I believe.) Not exactly celiac related.. but.. he talks about the current state of affairs in the prevailing medical circles and how it is incumbent on us to be the ones directing our own health care. Doctors are merely an adjunct to this and if you run across old school fools who don't know what's best for you.. RUN! ...sigh.. end of rant.

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kwylee Apprentice
kwylee
Posted

So happy to read stories about someone who got results from a doctor but didn't let that be the last word. And I think you're a wonderful parent to have continued the crusade to find out what was causing symptoms for you and your child. Bravo!!!

eah4me Apprentice
eah4me
Posted

Thank you so much for posting your story. I just found this website yesterday in my search to help my daughter and it has already been so helpful! My daughter also had golf ball sized tonsils which we finally had removed 3 months ago because of chronic strep. Now I'm wondering if it was related to a gluten problem. I've always wondered what is wrong with me as well and have been told by doctors I am just "small", have a fast metabolism, have a sensitive stomach, etc....everything but a problem with gluten. Like you, I'm hoping my search for answers for myself will help me find answers for my daughter as well. Best of luck to you and your son!

AVR1962 Collaborator
AVR1962
Posted

The insanity of the medical community. A known poison.. so, what do they want you to do? Take it so they can figure out whether it is causing a problem when, in fact, you have already done a self diagnosis. And they still can't figure it out and they want YOU to go back to destroying yourself so they can "help you???" Go find another doctor. Or, only use the doctor for what is absolutely essential and not related to your celiac care. There is much messed up in the medical community.. don't let it mess you up even more.

I have come to the conclusion that if a doc cannot prescribe a pill for whatever problem a patient has it is out of their feild.

eluvsphish Newbie
eluvsphish
Posted
  • Author

Listening to others who have been down this road I always find it interesting, espcially linking the symptoms. I had a bad case of mono when I was 6, again while I was still in grade school. I also had tonsilitis rumorous times....that finally subsided before ther age of 40, I guess it's rare after that point. Same roller coaster with depression.....went to groups therapy sessions, private therapy and have been on a few different anti-depressants. All of this I had not connected before and find it very interesting.

Recently I was at a family reunion and had been told one of my uncles was having trouble healthwise so I started talking to him. He is seeing a homeopathic doc who took him off glutens and dairy.....his thyroid is messed up and doc beleives he's had metal poisoning.

Not only are 2 of my daughters gluten and dairy intolerant but in our family we have had members diagnosed with diabetes, thyroid problems, stomach issues, cancers including stomach, heart disease, skin disorders, and schizophrenia. I want to tell the whole family to get off glutens as I feel this is killing them but when I tell them my story they look at me like I am weird.

I am just so thankful to be gluten free. I was real real sick before I figured out it was glutens. I have only been off glutens since April and slowly one by one all my symptoms have gone away. Crazy thing about this is docs could not figure out what was wrong. I had so many blood tests and went to so many specialists. Docs did not even meantion to me that my vitamins and minerals were low. I saw it with my own eyes when I requested the results of my lab work. I started taking the vitamins that I was defiencient in.....my muscle spasms and twitched finally stopped after I continually put potassium into my system. I was just floored.

In my case, it was my adult daughters who saw I was so sick and suggested I just try going off glutens. I figured I had nothing to lose, not thinking this was my problem and BINGO. Went to gastro to follow up, told them what I had doing and then they decided they wnated me to go back on glutens for 2 months so they could test me for Celiac. I did but got so sick (dizzy, burning stomach even on prescribed meds, gas, bloating, memory loss, tired- sleeping 10 hours a night, blurred vision, messed up depth perception) I could hardly function. I made it to day 12. Doc told me without following thru the 2 months they could not help me with symptoms and if I were to go back in their office with complaints related they would want me to go on glutens again to try and test me. I have not been back. It took longer to recover to time being back on glutens......I actually felt they could have killed me had a stayed on.

Wow! Our lives do sound a lot alike. I forgot to mention in my story that I had tonsillitis so much too. I also had a long bout with vertigo that no doctor could figure out. I got tired of hearing that I just needed water and rest. I am also immune to amoxicillan as a result of all of it that I took as a kid. I also couldn't take Benydryl, Alavert, Zyrtec, or any other over the counter antihistimine without breaking out in hives either. I haven't tried to take them since I have been gluten free, though. But, you hit the nail on the head. I know this would have killed me eventually, just as it did my grandpa when he was in his 40s. I hate that I never got to meet him, and now I seriously think gluten is the reason why.

eluvsphish Newbie
eluvsphish
Posted
  • Author

Glad to hear you finally found the answer for both yourself and your son. Also glad you found us. Thanks for sharing your story. We have heard many similiar ones. I have to wonder when doctors are going to start screening for celiac before folks have their lives so severely impacted. Other countries do screen routinely and they have much healthier populations. We deserve the same right to a long, healthy and happy life.

Thanks so much! And you are right! I was talking to a friend yesterday who grew up in Germany. She knew she was gluten sensitive since she was young. I so wish I could go back to every doctor I have seen and tell them that they need to do this. The problem is that so many of them have no idea about celiac or even where to start with testing. I am so lucky that places like Enterolab exist, or I would still be wondering what's wrong with me or trying to convince everyone around me that this is it. I'm just so glad I have proof now!

eluvsphish Newbie
eluvsphish
Posted
  • Author

So happy to read stories about someone who got results from a doctor but didn't let that be the last word. And I think you're a wonderful parent to have continued the crusade to find out what was causing symptoms for you and your child. Bravo!!!

Thank you! :)

eluvsphish Newbie
eluvsphish
Posted
  • Author

Thank you so much for posting your story. I just found this website yesterday in my search to help my daughter and it has already been so helpful! My daughter also had golf ball sized tonsils which we finally had removed 3 months ago because of chronic strep. Now I'm wondering if it was related to a gluten problem. I've always wondered what is wrong with me as well and have been told by doctors I am just "small", have a fast metabolism, have a sensitive stomach, etc....everything but a problem with gluten. Like you, I'm hoping my search for answers for myself will help me find answers for my daughter as well. Best of luck to you and your son!

Thanks so much! I told myself in the beginning that I was only going to do it for 2 weeks. I thought, "well, in 2 weeks, all of this gluten food in my cupboard won't be bad yet, so we can still eat it if that's not it." Well, by day 4, all of the gluten food was either in the garbage or donated because the changes were almost overnight for us! The first 3 days were awful, though. I was covered in hives and shaking a lot. But, by day 4, it was as if the fog cleared and I had more energy than ever. I hope you find the same results with your family. I'd love to hear your story!

  • 2 years later...
SarahJimMarcy Apprentice
SarahJimMarcy
Posted

I am really happy to have discovered this thread, though sad to see you suffered for so long. I did, too, and didn't get diagnosed until after my daughter got diagnosed. I had given up on myself, but for her, I gave it my all.

 

I, too, had mono twice, and wondered how a married woman, 44, could get it! The only information I could find about mono was on college websites, answering FAQs such as, "Will my roommate get mono?" and, "Can I still go to parties if I have mono?" Not helpful!

 

I hope the connection of celiac and mono is studied further. I've always wondered how I got it. Now I see it was celiac related.

kareng Grand Master
kareng
Posted

I am really happy to have discovered this thread, though sad to see you suffered for so long. I did, too, and didn't get diagnosed until after my daughter got diagnosed. I had given up on myself, but for her, I gave it my all.

 

I, too, had mono twice, and wondered how a married woman, 44, could get it! The only information I could find about mono was on college websites, answering FAQs such as, "Will my roommate get mono?" and, "Can I still go to parties if I have mono?" Not helpful!

 

I hope the connection of celiac and mono is studied further. I've always wondered how I got it. Now I see it was celiac related.

ANYone can get mono. It's not a sexually transmitted disease. Has nothing to do with being married or not. Just like a lot of contagious diseases, it will spread more easily in close quarters like a dorm. Perhaps you should expand your research to medical websites like this:

Open Original Shared Link

1desperateladysaved Proficient
1desperateladysaved
Posted

Incredible story, so glad it led you here.  I am using natural medicine as an integral part of my care.  I began my undeniable symptoms with  mono.  I tested negative after 3 months, but couldn't seem to shake the fatigue.   We suffered about as long.  So, glad your son won't have to. 

 

Dee

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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