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

mr. moore

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mr. moore Explorer
mr. moore
Posted

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

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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?

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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.

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      Feel like I’m starting over

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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
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