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

Bad Day


lancpa

Recommended Posts

lancpa Rookie

yea just feel defeated today. So many sensitivities is scary, and somehow isolating. I'm not even going to ask whats next. I'm on my own and would like to date but can't hardly even eat out without exposure at this point. does anybody have positive experiences with new people in their lives who can tolerate health issues and celiac. I'm not feeling energetic and not able to eat anything except sauce free veggies, fruit and meat. And I am broke from buying special food and supplements. So I can't offer altenative dates that cost money. Now I can't have anything with milk or butter or cheese in addition to wheat corn, rice, beans, soy and all the gluten free stuff i react to as well. i even react to potato starch. and all that other alternative grain, except quinoa. I'll adjust. I just want to scream stop. tomorrow will be betterI need to change the way i am thinking about this. If i think about it all as temporary It is managable. Has anyone out there heard of people being able to reclaim foods, or recover at all. i have been able to reverse the related problems but no head way on the foods. Maybe I've had this underlying milk thing all long and that's why I don't get better. Maybe it is good I know about it now and this will be the start of something better. thanks for listening to the rant. I'm ready to try anything, I'm calling my minister and setting up therapy. I'm a therapist and sometimes people heal from physical issues once they work out mental stuff.

Hey has anyone else heard anythng about their hypothalamus being depleated(by alternative medicine testing). So for people who have been malnurished, as I was as a kid, the hypothalmus can be depleted. the hypothalamus and the thyroid have alot to do with operating the Liver, and isn't it the liver that breaks down, or in this case fails to break down the protein chains. Well anyway my hypothalmus is beingsupplemented now and I do feel some better. Hypothalamus can be at fault in depression and ocd, maybe anxiety too, not sure. well, its a new one for me.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

First off ((((((hugs))))) you are not alone a lot of us struggle but as one who does I know that knowledge is little comfort.

I can only answer from my experience with other intolerances. When I was diagnosed I was not able to tolerate any dairy at all. It took about 6 months dairy free and a very cautious reintroduction of milk products starting with yogert and hard cheeses but I am now able to tolerate milk quite well. If you have an actual casein intolerance that may not be the case for you but for many of us dairy can make a reappearence.

One thing that I learned the hard way was not to overdo any particular food group. When I went gluten-free I started consuming a lot of nightshades (potatoes, tomatoes, peppers, eggplant). I ate them at almost every meal. Within a short time I started to react to them also. I had to eliminate them completely for a few months but now I can eat that family a couple times a week with no problems. I did the same thing to myself with soy not too long ago, I wanted to gain some weight so I started doing supplement shakes 3 times a day, knew it wasn't wise but did it any way and now I am paying for that. :angry::(

The healing process takes what seems like a very long time but when you consider how long it took for us to get sick enough to have celiac be found it makes sense that healing would take a while. I have gone back to eating just meats, fruits, veggies with little processed food it is a eating style that takes some getting used to but for me the inconvience is worth the trade off for good health.

If you are fortunate enough to have any celiac support groups near you perhaps joining might help, but if like me you are not near to one this board is a good substitute. I hope you feel better soon, both emotionally and physically, hang in there your not alone.

lancpa Rookie

Ravenwoodglass,

thanks for your response. We are on the same page about the support group. I just need some sympathy sometimes, and people who aren't experiencing it really can't get it. So thank you. Even just reading through the posts on here makes me feel not so alone. I'm reading up on all this stuff and that makes me feel some better as well. I really do appreciate your kind words. Thnx

Archived

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

  • 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 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    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
      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
      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
      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!
×
×
  • 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.