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Hello, New Here, Awaiting Tests

LeighsaH

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LeighsaH Newbie
LeighsaH
Posted
:) Hi! I am new here today. I have been sent for tests by my doctor today and I hope to have the results in the next 3 weeks. I am a bit nervous reading all the things that celiac disease can cause, since I seem to have most of the symptoms, and it's all abit scary right now, but I think this site might prove very supportive and helpful. Is there anyone else in here from the UK?
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Canadian Karen Community Regular
Canadian Karen
Posted

Hi! Welcome to the board!!! :)

Actually, we do have some people from the UK on the board here. I am sure they will be chiming in shortly!

Any questions you have, just fire away! There's a bunch of really great, helpful and knowledgeable people on this board!

Karen

nettiebeads Apprentice
nettiebeads
Posted
:) Hi! I am new here today. I have been sent for tests by my doctor today and I hope to have the results in the next 3 weeks. I am a bit nervous reading all the things that celiac disease can cause, since I seem to have most of the symptoms, and it's all abit scary right now, but I think this site might prove very supportive and helpful. Is there anyone else in here from the UK?

<{POST_SNAPBACK}>

Welcome to the board! When you read the other posts you will realize that no question is silly, stupid, or off limits. We will discuss anything - diarhhea, gas, bloating, cycles, excersize, makeup dating, foods, doctors, you name it. A lot of people are very knowledgable (if you every read any posts by celiac3270, you will want to ask him if he's sure he's only 14) and every one is helpful. The gluten-free diet isn't impossible, just takes effort and after awhile it will be second nature you won't even think about it.

lbsteenwyk Explorer
lbsteenwyk
Posted

Welcome to the board! YOu will find tons of great information here. Let us know how we can help :D

Mjohnson73 Apprentice
Mjohnson73
Posted

Welcome to the board!

I am still a "newbie" myself... I am still learning what is and isn't gluten-free..... I have been on the gluten-free diet for almost a month now and I have seen great improvements....still have some cross contamination stuff going on and still getting effects every so often but not nearly as bad as before!

but welcome to the board and I second the comment about celiac3270, he certainly does not seem to be only 14! he is incredibly knowledgeable.... as is everyone on this board! and very welcoming!!!

Again Welcome!

--Maya

jknnej Collaborator
jknnej
Posted

Welcome to the board! Take it one day at a time and try not to feel too overwhelmed. I've been gluten-free for 9 months (holy cow) and I'm still learning what I can and can't eat all of the time! You'll get used to it and this board is a HUGE resource; a real God send.

celiac3270 and Kaiti are huge experts and two of the nicest people here! (No offense to anyone else of course!!!)

  • 1 month later...
LeighsaH Newbie
LeighsaH
Posted
  • Author

Ok, it's been a while, but I was awaiting results. Now I have them and I DON'T have Celiacs, but they still don't know what's wrong. So, since I don't have it, I probably won't be around much, but thanks for being there. ;) Take care, all of you.

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floridanative Community Regular
floridanative
Posted

Please consider that some people don't have positive biopsy results, yet they still can't eat gluten. They are what is called 'gluten intolerant'. My GI told me this week that if someone is intolerant and continues to eat gluten, they will eventually get Celiac disease. So you may want to talk to your doctor about trying the diet to see if you get better. If you do, you'll have your answer as to what is wrong with you. Good luck getting better!

Tiffany M.

angelsea Newbie
angelsea
Posted
Ok, it's been a while, but I was awaiting results. Now I have them and I DON'T have Celiacs, but they still don't know what's wrong. So, since I don't have it, I probably won't be around much, but thanks for being there.  ;)  Take care, all of you.

<{POST_SNAPBACK}>

Yes, please consider what "floridanative" just said. I believe you said you are in the UK -- I wonder if you might have access to the book "Dangerous Grains" by James Braly. I got a copy from my library yesterday and am only about halfway through and am convinced that many, if not most of us, celiac or not, symptomatic or not, can benefit from a gluten-free diet (not that this is any indication that it would be an easy task!). I'm just realizing how naive I was to think that celiac disease was the only reason one might want to avoid gluten.

Good luck in your search for finding the solution to what ails you.

Guest BellyTimber
Guest BellyTimber
Posted

I'm from UK & only just seen your post, hope you haven't gone too far from forum yet!

There is also a message board based in the UK where everyone is welcome for any kind of wheat and gluten sensitivity/intolerance and interest in the gluten-free and/or WF life style for whatever sincere reason, and I think that is true of this forum too.

celiac disease is a construct and there has been emphasis on a certain pattern of phenomena whereas the reality is a variety of expressions throughout the body.

It's estimated 1 person in 80 in the UK has celiac disease but only between one in 4 and 1 in 10 is getting a diagnosis (depending on which book one reads), basically the vast majority are undiagnosed, from not testing, from misreading tests and from not carrying them out skilfully enough.

I didn't have all the right tests and was told to go gluten-free without having the endoscopy and apparently this is rather usual.

The professionals have vast experience of celiac disease and equivalent conditions - without knowing it.

Hence many of them are put off from adequately continuing examinations/management of the patient's condition.

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    • 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? 
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    • 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! 
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