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

Some Good News

alesusy

Recommended Posts

alesusy Explorer
alesusy
Posted

The good news it that my anti-transglutaminatose antibodies have gone down. They were at 78 in December when I went Gluten Free, now they are at 17.5: still over the 16 which marks the upper level of sensibility, but way down.

 

The other good news is that I have finally understood - I think - that I have to eat CAREFULLY. Which does ot only mean gluten-free and no lactose, but eat LITTLE, chew WELL, do not eat right before going to sleep. And keep to BASIC simple food. And for now, no spicy foods, no alcohol. Chicken, some meat, some fish, rice, some veggies, lots of fresh fruit (oranges, apples, ananas...), eggs, some gluten-free ham, home made gluten-free bread and muffins, sometimes quinoa, mais and gluten-free pasta. I have to resort to some processed food (crackers and the like) when I travel, otherwise I try not to. (These are just the recommendations we read in these forums for all newbies, I know, but everyone has to learn the hard way, I suppose...)

 

I still have very bad days, but I have understood it is not only gluten. Eating too much, drinking alcohol and/or eating spicy foods means that I feel like crap the day after even if I had no gluten at all, and I get back to the big D. My bowels are still too frail to absorb any kind of traumatic food. I'm also trying to follow my instincts and go for the things that make my water mouth (the exceptions are cheeses and creams which I still would like to eat but cannot - for now, hopefully).

 

I also keep a food diary related to symptoms, extremely useful.

 

My energy levels are generally much better. Still not what I would like them to be, but definitely better..

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

One of the few good things about celiac disease is that it teaches us to eat mindfully :) . that eating is not something that is done by just stuffing something in one's mouth and passing it down the esophagus while watching TV AND reading a book.  That you have come to this realization, that we are what we eat, that food is designed to nourish the body and we have to give OUR bodies the food they need rather than whatever is closest or everybody else is eating, is one of celiac disease's free gifts.   And then the better you feel the more aware you become.  It is all good.  Congratulations on this milestone :)

alesusy Explorer
alesusy
Posted
  • Author

Thank you Mushroom. Very wise words:-)

I've been travelling for two days in France and I'll be travelling again in April for two weeks. This means bringing crackers and stuff to keep up... buying lots of apples... and basically, either choosing the restaurants, or if I cannot do that, eating at least something sure BEFORE I go to the restaurant where everybody else is meeting. I've found my friends most accomodating until now. But what I mean is, dt's easier to eat little... and say "no thanks, no dessert" or "water is fine, thanks" with a smile! It means I have to take responsability for what I eat: I mean - of course I do that, but even if my friends are generally accomodating I cannot expect ten people to eat where I want. So I'll eat before, bring along crackers and just have a salad at the table without making a big deal out of it and without expecting people necessarily to get worried about me. It's my problem, not theirs, so I have to get organized...

funkflex Rookie
funkflex
Posted

The good news it that my anti-transglutaminatose antibodies have gone down. They were at 78 in December when I went Gluten Free, now they are at 17.5: still over the 16 which marks the upper level of sensibility, but way down.

 

Just curious, is this U/mL or some other unit of measurement? On my ttg-iga tests it says the reference area is <7 (U/mL), so I'm curious, do different labs use different reference areas..??? Or are we talking different units of measurement here?

 

Anyways, good to see that the numbers are coming down. 

 

I still have very bad days, but I have understood it is not only gluten. Eating too much, drinking alcohol and/or eating spicy foods means that I feel like crap the day after even if I had no gluten at all, and I get back to the big D.

 

This is my experience as well, I am 99,9% sure that I do not consume any gluten, but sometimes I still feel crap afterwards. Haven't found any patterns yet, but I am suspecting that I should stay away from pancakes and tacos and rather eat soup and wok dishes.

 

I also keep a food diary related to symptoms, extremely useful.

 

I talked to a nutritionist who recommended me to do the same, so that's probably a good idea.

 

My energy levels are generally much better. Still not what I would like them to be, but definitely better..

 

Good to hear. Read that you are traveling, I hope you're trying to stay away from stress as much as you can. Last week I ignored the advice of my GP and overdid it because I was feeling more energetic. I ended up getting a cold and woosh, I was dead tired again. I guess we're more susceptible to illnesses while the TTG levels are up. Just a friendly warning:-)

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
      6

      Son's legs shaking

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

      Son's legs shaking

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

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

      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....
    5. 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!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      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!
×
×
  • 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.