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Should I Get A Blood Test At All?

Nen

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Nen Explorer
Nen
Posted

I have not stopped eating gluten yet. I am not sure whether I should pursue getting a blood test first, or just do the diet.

My feeling unsure what to do stems from hearing of others being denied health insurance due to having a "pre-existing" condition of Celiac. Then again, in a few years pre-existing conditions might not matter (depending on what all happens here in the USA with all this healthcare reform battles going on).

Then again, I would know either yes or no based on the blood test, though there is still a margin of error with the current testing.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Testing wasn't a big deal to me. I pondered it for maybe one day. I decided the result would be the same in all cases. I was sick and I thought gluten was my problem. So it didn't make sense to continue to eat something that could be making me very very sick just to be able to let the Dr. tell me to go gluten free. The possible outcomes did not make testing worth it to me. 30% false negatives means you could eat gluten all that time for the test and still test negative and still be sick. The result? I would go gluten free anyway just to find out if it helped. But if I went gluten free immediately I stood the greatest chance for the fastest recovery if this was indeed my problem. It was. The first accidental glutening 4 days into the diet made me extremely ill. Dietary elimination and challenge is 100% accurate. Celiac testing is not. But if you are one of those who won't be able to stay gluten free without a diagnosis...then the testing might be worth it. However, if you are willing to give gluten free a try and be vigilant about observing your symptoms then you could go gluten free and not worry about it. Doesn't bother me if anyone calls me a Celiac or not. I can live like one if I want to.

cbonner Newbie
cbonner
Posted

Good morning NEN:I had the test done and should get my results back today.I had doctor problems getting the test because I don't look like a celiac.Insurance would pay for the test in stages-if test one is positive they would pay for test two ect.My feeling is that if test one is positive then test two is just for the doctor as I was going gluten free no matter what the test show.I guess if you need the results to help you stick with the diet they are worth the money.If feeling better is your goal why not try gluten free for 60 days and let your body decide if this helps you.I'm only five days into my diet;but my bloating is improving and I have more energy.Please try gluten free!Feeling better is worth the effort and the test may or may not show celiac.Let your body and health make the final decision!Charles

Roda Rising Star
Roda
Posted

I am diagnosed via blood work and biopsy. I was already covered on my health insurance for 5 years before I was diagnosed. I have never had a problem with any insurance I have had through employers with preexisting conditions. However, I have never been without coverage so that may make a difference too.

There are things a diagnosis could be good for. Some insurance policies won't pay for certain things without a qualifing diagnosis/symptom. Regular vitamin/mineral checks, bone mineral densitiy testing, additional scopes, screening for other autoimmune disorders, etc. may get those things done sooner and covered. Just food for thought. However, you have to make the decision that is best for your. Good luck and welcome.

mushroom Proficient
mushroom
Posted

The problem with insurance arises if you ever have tp take out individual insurance, rather than be covered by an employer's policy. With individual insurance everything counts against you, even high blood pressure controlled by medication. So if you foresee in your future being self-employed and single,or a partner of someone who has individual health insurance, a diagnosis of celiac could be a problem, because I don't believe anyone in the U.S. should be without health insurance. And I have no idea what is going to happen with ObamaCare.:rolleyes:

Only you can decide if you can live without a diagnosis. Of course, you may be forced to live without a diagnosis if you belong in the 20--30% who test negative for celiac, but are gluten intolerant nonethelessll. Being intolerant of gluten and testing positive for celiac, unfortunately, are two different paradigms. But the treatment for each is the same - a gluten free diet. So you must decide if you need someone to tell you to stop eating gluten, or if you can tell yourself to stop eating gluten. The testing is not necessarily going to tell you yes or no. What will you do if it is negative? Continue to eat gluten? Or give yourself a chance to be well and stop?

Again, I am not telling you what to do, but I believe these are the things you should consider.

By the way, I love your screen name - that was my nickname as a child, in fact what I called myself because I couldn't pronounce my name. :D

Nen Explorer
Nen
Posted
  • Author

Thank you all for the replies, it is food for thought. The kicker is that I do not have insurance already, so I could be shooting myself in the foot if it was diagnosed and I am not on insurance.

Sometimes I *really* hate the USA's healthcare system, its like you are punished for being a human. That though could be a whole other thread!

Aly1 Contributor
Aly1
Posted

I had not even thought of the health insurance angle when I got tested. I am out of work and have no insurance - this is the first time I've been glad my test was negative despite my symptoms!

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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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