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Getting Tested

gfpagan

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gfpagan Apprentice
gfpagan
Posted

If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

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maile Newbie
maile
Posted
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

gfpagan Apprentice
gfpagan
Posted
  • Author

Great reply! that makes me feel more confident in my decision. I hate the idea of having to go back on gluten to get a test that may or may not tell me something that I'm going to do anyway.

Thank you!

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

Tallforagirl Rookie
Tallforagirl
Posted
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

You may not need to know, but if you're not going to get tested I'd err on side of caution and get a full blood count and bone density test. Vitamin deficiencies and osteoperosis are very common amongst undiagnosed celiacs, but both treatable if caught early.

rinne Apprentice
rinne
Posted

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

gfpagan Apprentice
gfpagan
Posted
  • Author

I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

rinne Apprentice
rinne
Posted
I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

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gfpagan Apprentice
gfpagan
Posted
  • Author

Thank you (-: I feel good knowing I discovered it myself and didn't have the frustration (at least too much) of doctors trying to tell me otherwise.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

Leper Messiah Apprentice
Leper Messiah
Posted

I'm in the same boat although I'm weighing up tackling the stoopid gluten challenge just to get a prescription for gluten free food (from the NHS in the UK) - it is literally costing me a fortune. Here's hoping a better way to test and confirm gluten intolerance is not too far away.

one more mile Contributor
one more mile
Posted

There should be a better way to be tested. I have not been tested and can not imagine Eating what I know is poison just to find out officially that it is. In the uk will they accept the DNA test?

ang1e0251 Contributor
ang1e0251
Posted

I think it is barbaric to make you eat gluten for weeks for a test. Come on, do you know any GI dr that would rub poison ivy all over his body every day for 3 months just so it could do a huge amount of damage to skin to dx it?

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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