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

3 Years Gluten Free. How To Get Tested?

Lshetler

Recommended Posts

Lshetler Rookie
Lshetler
Posted

The title's pretty self explanatory. I have a doctor's appointment soon and I'm going to demand that I be properly tested. The only problem is that I don't know what that means (and lord knows my doctor doesn't either). Is it possible to be tested on a gluten free diet? If not what do I have to do?

Thanks

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

The title's pretty self explanatory. I have a doctor's appointment soon and I'm going to demand that I be properly tested. The only problem is that I don't know what that means (and lord knows my doctor doesn't either). Is it possible to be tested on a gluten free diet? If not what do I have to do?

Thanks

Why do you feel like you should "demand" a test? Did someone put you on the diet with scanty evidence? If you require a gluten-free diet to feel healthy, for whatever reason, the test would make no difference.

If you've been strict for three years, you should have no antibodies to test for. You're looking at a gluten challenge. You would eat gluten (equivalent of 4 slices of bread a day) for a bare minimum of a month, and probably two months for a clear result since you've been gluten-free for so long. This would get your bodies to produce the antibodies and autoimmune intestinal damage that the tests look for.

You could get a genetic test gluten-free, but if you're of Northern European descent, you have a 30%-40% chance of carrying DQ2 or DQ8 that are associated with celiac. (If you count DQ1, DQ7, and DQ9, almost everyone has a "positive" genetic test.) If you turned up DQ2.5, you would at least know you have a gene that is very strongly associated with celiac.

Lshetler Rookie
Lshetler
Posted
  • Author

Meh, I guess I'm screwed, lol. Thanks for the info. I just wanted a definitive test, because my friends think I'm crazy and sometimes I believe them.

Actually, I heard, from a gastroenterologist, about a biopsy where they check for white blood cells after you've eaten gluten. Does such a test exist or is that the regular test that involves a gluten challenge?

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Making yourself sick again for a few months in order to get a test just to "prove" to your friends that you shouldn't eat gluten is a little silly, don't you think? What will you do if your results all come back negative? Would you go back to eating gluten even if it makes you sick? I'm sorry, but I trust my body more than I trust a test that has a high rate of false negatives. If your friends are not supportive, maybe it's time to get new friends.

Now all that being said, there have been times when I have been curious about whether I would test positive. I have strongly considered doing the gene testing (which doesn't require you to poison yourself with gluten). You could get that done and show the results to your "friends". Unless they have studied celiac and gluten intolerance in detail they will not know that a positive genetic test just means you have a high probability of having celiac disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

This question so clearly illustrates why the US needs to start using the rectal or buccosal challenges. I hope they start to in my lifetime.

Rant over.

I also think your 'friends' need to leave you alone about this issue. It is your body and your choice what you put in it and they need to but out.

  • 8 months later...
wisdomwanted Newbie
wisdomwanted
Posted

I was very thankful for this topic. I just got home from talking to a nutritionalist who strongly recommended I get tested, even though I've been gluten-free for over a year now. I'm a college student, and am not willing or able to give up 1-3 months of my life to feeling miserable again, just so I can take a test that may or may not be right.

I just joined the forum to be able to get more helpful input/support.

mushroom Proficient
mushroom
Posted

The people who recommend these challenges don't have to live through them, or live with the consequences of them :rolleyes:

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

Celiac.com Sponsor (A8-M):


missj Rookie
missj
Posted

Meh, I guess I'm screwed, lol. Thanks for the info. I just wanted a definitive test, because my friends think I'm crazy and sometimes I believe them.

I totally understand the whole "Friends think I'm crazy" thing. I was told that my intestinal issues can only be UC or Crhons, simply because my mother had UC. So, I staretd a raw vegetarian diet so I could get enough fiber and maybe get some relief from the constipation. It hasn't worked. Go figure. They all thought I was nuts! "why? Meat is delicious!" blah blah blah. Yes it is, but it's also hard to digest. Now I want to go back to gluten-free but I have done it before and they thought I was crazy for that too. I love them, but unless they live the pain, they won't ever get it. Just do what you feel is right for your body. That is what everyone around here has been telling me! :D Good Luck!

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

I was very thankful for this topic. I just got home from talking to a nutritionalist who strongly recommended I get tested, even though I've been gluten-free for over a year now. I'm a college student, and am not willing or able to give up 1-3 months of my life to feeling miserable again, just so I can take a test that may or may not be right.

I just joined the forum to be able to get more helpful input/support.

I have to admit I was one of those friends (or sister) in this case. It's not that I didn't support my brother, because I did. I knew he had celiac and if he ate wheat he would get a nasty itchy rash.... :(

Now my son has the same thing and man do I ever have more sympaty for him now and his wife too who has to do all the shopping and baking :blink: It is soo overwhelming.

When people don't understand they don't take it serious enough but I certainly agree with these ladies it isn't worth putting yourself and your body through a test like that. You obviously went off gluten for a reason and it was worth it enough to stick with it.

My friend who has celiac was told by her nutritionalist NOT to have her son tested! (and should be in my opinion. )

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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
    2. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
    5. Wheatwacked
      - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748
    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.