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

Going To The Docs Today

ashnyaya

Recommended Posts

ashnyaya Newbie
ashnyaya
Posted

I am a new member here. Before posting i have read alot of the post on these boards and they are extremely helpful. I was so frightened when my doctor said the words "celiacs disease". I was going to the doctor originally because i had bloody stools and stomach pain with bloating and constantly having bowel movements after everything i eat. So I had an endoscopy and colonoscopy. Colonoscopy was fine but the biopsies from the endoscopy showed possible celiacs disease. My doctor ordered me to have a capsule endoscopy ( the weirdest but really interesting). The results from that showed my villi were extremely damaged. So the doctor ordered me to have the blood test done. So, now to the point, I go to the doctor today to find out the results from my blood test. I have been doing alot of research on here so i think I have prepared myself a little, but I am still a little nervous. I am 27 and female and have a big, extremely italian family. This will be a lifestyle change for me. I guess I will have to start bringing my own food to family gatherings because i know they will look at me insane if I try to change family recipes.

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!

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

Celiac.com Sponsor (A8-M):


Metoo Enthusiast
Metoo
Posted

I am a new member here. Before posting i have read alot of the post on these boards and they are extremely helpful. I was so frightened when my doctor said the words "celiacs disease". I was going to the doctor originally because i had bloody stools and stomach pain with bloating and constantly having bowel movements after everything i eat. So I had an endoscopy and colonoscopy. Colonoscopy was fine but the biopsies from the endoscopy showed possible celiacs disease. My doctor ordered me to have a capsule endoscopy ( the weirdest but really interesting). The results from that showed my villi were extremely damaged. So the doctor ordered me to have the blood test done. So, now to the point, I go to the doctor today to find out the results from my blood test. I have been doing alot of research on here so i think I have prepared myself a little, but I am still a little nervous. I am 27 and female and have a big, extremely italian family. This will be a lifestyle change for me. I guess I will have to start bringing my own food to family gatherings because i know they will look at me insane if I try to change family recipes.

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!

Welcome!

Well, keep in mind the blood tests have a 30% false negative rate, so as my doctor said, if you have 100 celiacs in a room, it will only identify 70 of them...the other 30 would have a negative blood test for celiac, even though they have it! So no matter what your blood test, you should go probably try gluten free.

BabsV Enthusiast
BabsV
Posted

Ok I am rambling on. But my point was that I am new to this and could really use some advice, words of wisdom, and whatever you think would help me out!

Welcomes! You've come to the right place for support, information, recipes, pep talks, a chance to vent when you need to, etc.

Check out this stellar post, on the "Coping With" forum...wish I'd seen this right after my diagnosis. It would have made life soooooo much easier/better.

ashnyaya Newbie
ashnyaya
Posted
  • Author

Thanks for the kind words. My results from the blood test came back positive. So i am finally officially diagnosed. The doctor was no help though he just gave me pamplets and said be on a glueten free diet and see ya in a year lol! Thank goodness this forum is so helpful.

mushroom Proficient
mushroom
Posted

Welcome to the club no one wants to join. I hope we can make your time here pleasant and informative.

You do have a lot of reading to do, though. On here you will find help about deglutenizing your kitchen and cookware, who not to kiss and when :D , how to deal with family and friends, and a zillion and one things that may pop up. Feel free to pose questions whenever you can't find an answer, and vent away -- we have been down the path and we will sympathize. :) Starting with, the doctor's reaction was totally normal. Most of them know little about nutrition so there's not much point in their pretending they do.

MitziG Enthusiast
MitziG
Posted

Yes, welcome! Hope your new lifestyle will have you feeling better soon! If your family loves to cook, they can be a great asset in helping you make gluten free substitues for the pasta and bread they traditionally serve. Expect a lot of duds in the beginning though- gluten-free cooking definitely has a learning curve! You don't have to give up the foods you love- but you will lose a lot of convenience, and that takes some getting used to!

ashnyaya Newbie
ashnyaya
Posted
  • Author

I need some advice on degluetenizing my kitchen. Any advice is helpful!

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

Celiac.com Sponsor (A8-M):


ashnyaya Newbie
ashnyaya
Posted
  • Author

Welcome to the club no one wants to join. I hope we can make your time here pleasant and informative.

You do have a lot of reading to do, though. On here you will find help about deglutenizing your kitchen and cookware, who not to kiss and when :D , how to deal with family and friends, and a zillion and one things that may pop up. Feel free to pose questions whenever you can't find an answer, and vent away -- we have been down the path and we will sympathize. :) Starting with, the doctor's reaction was totally normal. Most of them know little about nutrition so there's not much point in their pretending they do.

Wait, I can get glueten from kissing someone? That is so weird. I definately need to do some research!

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I need some advice on degluetenizing my kitchen. Any advice is helpful!

It seems like we get more sensitive to gluten once we're off it for a while, so take the time now to go through your spices and seasonings, condiments in the fridge, etc. Get rid of anything with gluten. Then wash down anywhere you've had gluten stored or used.

I didn't have the energy to wash down shelves and cabinets when first Dxed.

I just did it and got a real strong gluten reaction.

Be sure to check any medications or supplements, change your toothbrush, clean or replace your can opener.

Check out IH's gluten 101 list. There's tons of helpful hints there.

Good luck to you..and best wishes for good health. :D

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. 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...
    3. 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?
    4. 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...
    5. 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....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,873
    • Most Online (within 30 mins)
      7,748
    kellz
    Newest Member
    kellz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • 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! 
×
×
  • 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.