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Hello From Greenville, Sc


NightOwl

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NightOwl Newbie

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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Gemme Rookie

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

NightOwl Newbie

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...).

  • 4 months later...
JennShad Newbie

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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    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
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    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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