Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hello From Greenville, Sc

NightOwl

Recommended Posts

NightOwl Newbie
NightOwl
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemme Rookie
Gemme
Posted

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
NightOwl
Posted
  • Author

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
JennShad
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      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....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.