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

I Want To Get A Test Done But Im Worried ...

mr. moore

Recommended Posts

mr. moore Explorer
mr. moore
Posted

if it comes back negative, that it was all in my head!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Tests aren't perfect and false negatives are seen but the adherence to the diet and the resolution of symptoms is also a diagnostic tool. After you have all the testing done that you choose to do a dietary trial of the gluten free diet can sometimes provide the answer.

ShayFL Enthusiast
ShayFL
Posted

That's right. I was NEG for hypothyroid for nearly 15 years (because the lab ranges were WRONG). It WAS all in my head until I showed my doctor the correct lab ranges and got treated properly (and got better).

So do not worry if you get a NEG result. Try the diet anyway. If it works for you, then you have your answer. Even if they still think it is all in your head, at least you will have a healthy head now. :)

lizard00 Enthusiast
lizard00
Posted

False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

caek-is-a-lie Explorer
caek-is-a-lie
Posted
False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

Haha I want YOUR doctor! My doctor said via e-mail the basic equivalent of "if it hurts, don't do it" and left it at that. Testing was optional. He didn't think testing was necessary but at the same time left it up to me to figure out what to call it. Doctors confuse me. Is 4 weeks gluten free too late to do a blood test? He wouldn't say. I'll never know if I have intestinal damage. In a way I guess it doesn't really matter if the diet's working, but on the other hand I think it kind of stinks. I kind of want to know (unless it's negative and they use that to call me crazy.) You can see my dilemma and I can't seem to get a straight answer from anyone. *sigh*

LAH Newbie
LAH
Posted

I'm in the same situation as I finally realized I needed to stop eating gluten about 3 years ago but I did not have insurance so I just stopped eating gluten and started getting better. Now I wonder if I made a mistake but I can't imagine eating gluten again just to get an 'official' diagnosis. I"ve accidentally injested gluten or gluten contaminated food several times and honestly say I don't want to suffer the price just for a positve test. I talked to one woman who was DX after a 2nd enteric biopsy, apparently the first pathologist was blind or the doctor took villi from a patch of undamaged tissue but she was brave enough to go back for a second biopsy.

I've been lucky to find a nurse practitioner who has celiac disease and she told me it could be gluten intolerance or celiac disease after I described the symptoms I was exeriencing to her. I was so relieved to find someone who understood the symptoms I was experiencing and who could tell me that some people do become very sensitive to small amounts of gluten once they go on the diet.

Stay on the diet why suffer more?

mr. moore Explorer
mr. moore
Posted
  • Author

stay on the diet for sure!! ;)

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

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

Celiac.com Sponsor (A8-M):


caek-is-a-lie Explorer
caek-is-a-lie
Posted
stay on the diet for sure!! ;)

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

The tiniest little remnant of a crumb that I tried to wash off my fork with soap and lots of hot water. That's how much. (someone used my fork at work to eat cake! Ahhh the horror!!! I seized all night.)

LAH Newbie
LAH
Posted

I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free. :o:o

mr. moore Explorer
mr. moore
Posted
  • Author
I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free. :o:o

**U(*(&(*&(*#*#**# :angry:

what?! you mean ive been eating brown rice bread that could have gluten in it? is there ANY FREAKIN way to do this diet?! what does ppm mean?

mushroom Proficient
mushroom
Posted

ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

mr. moore Explorer
mr. moore
Posted
  • Author
ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

mushroom Proficient
mushroom
Posted
but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

Not back to square one, exactly. Certainly gluten is to be avoided entirely to the best of one's ability, but even if you get accidentally glutened, while you will suffer and do some additional damage, you will not go all the way back to square one. What I was saying in my clumsy way was that different people have different sensitivities and food processors are allowed to claim gluten-free status in the U.S. for foods that contain less than 20 ppm. Some people will react even to these, others will not. Some are afraid to walk down the flour aisle in the supermarket; others are not that sensitive. You will have to determine your own level of sensitivity.

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. trents
      - trents replied to Rejoicephd's topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part....
    2. trents
      - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one...
    3. Scott Adams
      0

      Espresso Sea-Salt Brownies (Gluten-Free)

    4. Rejoicephd
      - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

      Hey all Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium - nearly too low potassium - nearly too low chloride - high CO2 - low anion gap This is now after being nearly gluten-free for over a year (although I admit I make...
    5. xxnonamexx
      - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,321
    • Most Online (within 30 mins)
      7,748
    Unitonika
    Newest Member
    Unitonika
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Basic metabolic panel results - more flags

      By trents · Posted

      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By trents · Posted

      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.