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Hello From Greenville, Sc
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Hi everyone! I actually joined this forum in 2007 but stopped coming here, at the time I lived in W. Palm Beach, FL but 2 years ago I moved to SC. I am a 50+ divorced mother of 2 adult children, and I have a beautiful 2 y.o. granddaughter.

I have never been diagnosed w/celiac but my father died as a consequence of it and I'm sure that's what killed his mother as well. But because I never even told a doctor about my suspicions, it was easy for me to be in denial. Around the year 2000-1 I did begin to see that wheat was not my friend. I remember one time when I suddenly began feeling awfully depressed, tired and my clothes were suddenly tight; I realized I'd been eating whole wheat bread daily for several days so I decided to stop and see what happened and I was amazed when 6 lbs. dropped off me in less than 3 days.

Anyone would've thought that had made a believer of me but it didn't, I thought at worst I just had a "wheat allergy" because I didn't seem to react to rye. The only other cereal I ate occasionally was oats, but it was hard to tell if they affected me because I ate them with honey and molasses and I was supposed to avoid sugars because of my hypoglycemia. So for years I went back and forth avoiding wheat (& dairy too) for months but eventually falling into temptation again.

I'd read somewhere that some people supposedly can eat gluten again after 6-12 mo. of abstinence and I was hoping to be one of those (if they indeed exist), so I guess that delusion helped me continue my destructive pattern. At first there was no reaction whatsoever, then my chronic congestion would get worse causing apnea attacks when I slept (but I often could get around that taking Loratadine), my face contour would change looking rounder and my upper eyelids puffy, and I'd gain weight extremely fast.

But then two years ago I began having clear intestinal problems when eating wheat, I remember being doubled over with colic wishing I at least could go to the bathroom and "get rid of it". Naturally, I stopped but foolishly repeated the same cycle 2 more times, each time with increasingly serious consequences, the last time, because of my Adrenal Fatigue the symptoms were horrendously scary and I swore I'd never touch gluten foods ever again because I do not want to have to go through that ever again, and not only that, it's taken me much longer to recover this time. :-( I'm hoping though that my experiences with this affliction will allow me to help others in the future.

Ok, now that I got my story out, if there's anybody from Upstate SC in this forum I'd love to connect with you, but I'll also be happy to find any friends close to my age from anywhere, I'm sure everyone knows how lonely having celiac can be, it's like others have no clue as to how bad this can be and how difficult it is to try to live in a world where just about everything has gluten in it.

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Hi everyone! I actually joined this forum in 2007 but stopped coming here, at the time I lived in W. Palm Beach, FL but 2 years ago I moved to SC. I am a 50+ divorced mother of 2 adult children, and I have a beautiful 2 y.o. granddaughter.

I have never been diagnosed w/celiac but my father died as a consequence of it and I'm sure that's what killed his mother as well. But because I never even told a doctor about my suspicions, it was easy for me to be in denial. Around the year 2000-1 I did begin to see that wheat was not my friend. I remember one time when I suddenly began feeling awfully depressed, tired and my clothes were suddenly tight; I realized I'd been eating whole wheat bread daily for several days so I decided to stop and see what happened and I was amazed when 6 lbs. dropped off me in less than 3 days.

Anyone would've thought that had made a believer of me but it didn't, I thought at worst I just had a "wheat allergy" because I didn't seem to react to rye. The only other cereal I ate occasionally was oats, but it was hard to tell if they affected me because I ate them with honey and molasses and I was supposed to avoid sugars because of my hypoglycemia. So for years I went back and forth avoiding wheat (& dairy too) for months but eventually falling into temptation again.

I'd read somewhere that some people supposedly can eat gluten again after 6-12 mo. of abstinence and I was hoping to be one of those (if they indeed exist), so I guess that delusion helped me continue my destructive pattern. At first there was no reaction whatsoever, then my chronic congestion would get worse causing apnea attacks when I slept (but I often could get around that taking Loratadine), my face contour would change looking rounder and my upper eyelids puffy, and I'd gain weight extremely fast.

But then two years ago I began having clear intestinal problems when eating wheat, I remember being doubled over with colic wishing I at least could go to the bathroom and "get rid of it". Naturally, I stopped but foolishly repeated the same cycle 2 more times, each time with increasingly serious consequences, the last time, because of my Adrenal Fatigue the symptoms were horrendously scary and I swore I'd never touch gluten foods ever again because I do not want to have to go through that ever again, and not only that, it's taken me much longer to recover this time. :-( I'm hoping though that my experiences with this affliction will allow me to help others in the future.

Ok, now that I got my story out, if there's anybody from Upstate SC in this forum I'd love to connect with you, but I'll also be happy to find any friends close to my age from anywhere, I'm sure everyone knows how lonely having celiac can be, it's like others have no clue as to how bad this can be and how difficult it is to try to live in a world where just about everything has gluten in it.

Thank you for sharing.

I am celiac and have learned , reading yr post.

Thanks for giving yr time

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Thank you for sharing.

I am celiac and have learned , reading yr post.

Thanks for giving yr time

Hi, thanks for responding to my post, I had not yet figured out how to get notified by e-mail of replies so I just coincidentally came back around here and saw you had replied.

I'm glad my post offered something, I'm sure we all have experiences that can be useful to others. I now have to "educate" my sister who believes eating gluten occasionally is not a big deal, that's what she did with my father, kept giving it to him when he asked for it, and now I'm not surprised that her adult son, who I learned yesterday was diagnosed several years ago, still cheats fairly regularly and he thinks as long as he can avoid getting diarrhea everything's "ok". :o But then for years I used to think that all I needed to avoid was making my nasal congestion worse... I thought it was all due to a connection to my mold sensitivity (as wheat contains mycotoxins, on top of everything) because for a while it looked like I could get away with it during the winter months, but I'm now not exposed to mold anymore and kept getting worse due to my cheating and I now I understand that the antibodies had attacked my thyroid, adrenals and liver (so far that I knew of...).

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Hello! And Welcome! I too live in Greenville and have been DESPERATELY looking for folks to link up with! Your story sounds exactly exactly like mine!! I have not been diagnosed, but have had my suspicions for years. The symptoms and complications seem to be getting worse each time I go off gluten for a time, then go back. I am really hoping to connect with some people that already know of some good docs in the area that are educated and knowledgeable about celiac disease...my experience is that they all just want to tell you, you have IBS or something...and they don't want to listen. I hope you check back soon!

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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