Testing - Is It Worth It? (Newbie Here)

[i3oogieDown]

Good afternoon everyone:

 

Over the last 7-8 years or so I started to experienced intense food cravings and compulsive overeating of pasta and bread,and later severe GI problems that caused hemmoroids, bleeding, and long periods of bloating/constipation/discomfort.  I approached my doctor about it approx. 3 years ago, and she suggested that it was a common fiber/water intake issue.  However, despite changing my diet and taking supplements, the problems continued to worsen.  I'm 33 years old right now.

 

Back in March 2013 I did a "colon cleanse," which changed everything for me.  The 5-day juice/fiber fast completely eliminated my food cravings/overeating issues and really helped me to more clearly identify how different foods affected me.  After talking to a girlfriend who has celiac's (she wasn't diagnosed until age 26!), I went gluten-free for a month, and then tried re-introducing beer.  OUCH!  After another cleanse and some more trial and error (both on purpose and by accident), I have become MUCH more sensitive to gluten.  I have been extremely careful, reading labels and asking questions, but my last slip-ups involved eel sauce on sushi, and more recently, tofu that was deep-fried in shared oil (oops).  I have become quite familiar with the increasingly severe GI effects of being "glutened," which usually hit starting two days after an exposure, and are very intense for least a week. I don't seem to be back to normal for at least 3 weeks, however.  It has now been almost 3 weeks since my last slip-up (I think)... I was starting to feel better, but I've noticed that hard-to-digest foods (such as dairy, even caffeine) seem to "bring back" the gluten gut symptoms at times.  I had caffeine over the weekend, and I've really been hurting the past few days.

 

I've been vegetarian since a fairly young age (meat never tasted good to me) and probably ate entirely too much pasta and bread over the years (particularly in college).  I am also lactose intolerant, but the symptoms are usually just stomach pain/bloating, not anything intestinal.  I have not officially been tested or diagnosed with celiac's, but I have consulted with my doctor.  She said that my symptoms sounded like a celiac-type reaction, and suggested that if it makes me feel better, I should just avoid gluten-containing foods (which I have done).  

 

I am scared to death of going back to eating gluten so that I could be tested. So really, what is to be gained from testing, other than a confirmation of what I already know? Could celiac affect me if I were to become pregnant? Are there other long-term health complications that only testing/diagnosis could identify?  What are the alternatives to the blood tests that could provide some information?  Is a colonoscopy worth it?  What would you do if you were in my situation, and why?

 

Thank you in advance!! 

 

<3  Sarah

[NoGlutenCooties]

Hi Sarah -

 

There are some benefits to getting tested...

   -  you have an official diagnosis, which some people seem to need to have the motivation and will-power to stick to the gluten-free lifestyle

   -  you have an official diagnosis, so future doctors cannot claim that it's all in your head and/or ignore your requests for gluten-free meds, etc.

   -  the biopsy can diagnose other issues that may also be going on

 

All that said... if it were me and I was having severe reactions to gluten I would not be likely to go through the torture of going back on gluten long enough to get tested.  I would go 100% gluten-free - but it MUST be 100%.  No cheating.  You need to get the last of the antibodies out of your body and never make them again.  It's 100% or nothing.  If you continue to have internal issues you could then request an endoscopy and potential biopsy to see if there is something else going on too.  But that's just me... I'm no doctor.

 

I can't speak to the pregnancy question.

 

Welcome to the forum and Good Luck!

[nvsmom]

I agree. The main benefits of testing are being able to stick to the diet better, and sometimes having accommodations made for you at places like school.  I would think that you would tell doctors that you have celiac disease and they would take that into account for future treatment, like during a pg.

 

On the other hand, an endoscopic biopsy requires a gluten challenge of only 2-4 weeks; if you can handle that, it might be a good test to pursue - and get the blood work done as well... You never know. 

 

You could always try the testing right now. It took my tTG IgA levels almost a year and a half to get down to normal levels. You might be slow like me. Most take a few weeks to months.

 

You might want to check your nutrient levels. Ca, D, B12, Fe, K, A, Cu, and zinc are often low in celiacs. Thyroiditis and diabetes are common in celiacs too so you'll want to keep an eye on that.

[i3oogieDown]

You both have some points that I hadn't considered. Motivation to stick to the diet really hasn't been much of a problem lately - long-term pain and suffering is a great deterrent. I've found that I'm starting to lose my taste for many of those things (beer, bread, etc.) since I have such a strong reaction to them. My main problem seems to be accidental exposure, thinking something is gluten free when in fact it is not, and then finding out the hard way 2-days later. :/ Perhaps I'll talk to my doctor again about the testing situation... maybe it's worth a shot.  Hadn't thought about the nutrient levels either.  Thank you both so much.

[nottoosoupy]

I went gluten free on my own as well and would not go back regardless of a diagnosis.  My symptoms are a little less severe than yours - usually lasts for 3 days only and begins the day after eating gluten by accident.  Even still, I was unwilling to go back on it to get the blood panel done.  I did have an endoscopy 6 months after going gluten free which isn't recommended - do it as soon as you can if you plan to get testing.  My results came back as 'unremarkable' with doctor notes saying I had mild flattened mucosa so the chances are slim of getting a diagnosis after being off gluten for a significant period of time, but it honestly depends on the damage that has been done and everyone is different.  My feeling has been that I don't really need the celiac official diagnosis because the only 'cure' is not eating gluten.  I am doing that anyway and I am unwilling to go back on it for an official result.  That is just me obviously - you need to decide for yourself if the diagnosis is what is important or if you are just OK with the result of not eating gluten.  Good luck

[cyclinglady]

I can offer up both sides. 

 

I am formally diagnosed but my husband is not.  He's been gluten free for over 12 years at the advice of his GP and my allergist.  Through trial and error, he managed to go gluten free that first year.  He now refuses to do a gluten challenge.  He knows that gluten makes him sick and that's been good enough.  But, he'll be the first to let you know that I have received much better support from family, friends and doctors since it's official!  

 

I'm glad that I was diagnosed formally.  My only symptom was anemia.  I never would have guessed in a million years that I had celiac disease not with my husband having gluten issues already.  Adhering to the diet was easy with that formal diagnosis.  No self doubts at all.  The proof was in the blood test and biopsy (taken via endoscopy -- not a colonoscopy).  

 

As far as being pregnant, getting pregnant with undiagnosed Celiac Disease (eating gluten) seems to be a problem.  Eating gluten free (if you have celiac disease) while pregnant should make for a healthy pregnancy, but I'm not a doctor.  Having that formal diagnosis would also help in seeking treatment for your future children.  

 

Good Luck! 

[0range]

Having untreated celiac disease (or any other autoimmune disease) does increase your risk of infertility/miscarriage, so I would encourage you to get tested if you suspect it!

[1desperateladysaved]

I didn't dare eat gluten for testing.  I did genetic testing and found that I was overwhelmingly positive.  We checked for nutrient levels and they were low.  Other symptoms seemed to back the diagnosis.  I lost the enamel off my teeth when I was 17.  I had to take iron supplements, or I would be anemic.  I had immature red blood cells in spite of the ferritin supplements.  My nutrient levels resolved to normal to good during treatment.

 

 

Meat is a very nutrient dense food.  There are many kinds to choose from.  Your body needs all of the healing power it can get.  I have found that I can eat things that are not my favorite for my health's sake.  Some here decided not to be vegetarian anymore after their diagnosis.  As for me, I moved toward eating less meat the last summer before my severe symptoms, it wasn't a happy time.

 

Whatever you do toward healing,

 

I wish you well.

 

D

[i3oogieDown]

Thank you all so much for your input!  What's the deal with the genetic test?  Is that a way to positively identify celiac disease without the need for a gluten challenge?  Is it something that is usually covered by insurance?

 

I'm currently feeling better than I have in a very, very long time.  I'm eating mostly vegetarian with some occasional seafood and seem to be doing great.  I have more energy than I've had in recent memory, and my concentration is good even without caffeine.  I can't imagine going back to eating that stuff...

[NoGlutenCooties]

Thank you all so much for your input!  What's the deal with the genetic test?  Is that a way to positively identify celiac disease without the need for a gluten challenge?  Is it something that is usually covered by insurance?

 

I'm currently feeling better than I have in a very, very long time.  I'm eating mostly vegetarian with some occasional seafood and seem to be doing great.  I have more energy than I've had in recent memory, and my concentration is good even without caffeine.  I can't imagine going back to eating that stuff...

 

It's great to hear you're feeling better!  As far as the genetic test - it does not actually test for Celiac Disease.  It tests for the genetic markers for Celiac.  There are two genes that they test for:   HLA-DQ2 and HLA-DQ8

If you don't have the genes, you cannot get Celiac (although I think there have been a couple of people on this forum who have tested negative for the genes and still have either Celiac or Non-Celiac Gluten Intolerance - hopefully one of them will chime in on this account).  It is estimated that around 30 - 40 % of the population has the genes that predispose them to Celiac, but only about 1% of the population actually gets it.

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I'm not sure about insurance paying for the test - I suggest asking your insurance company before getting the test done.

[Cosmin]

Hey hey,

 

I'm a newbie also and I have a loooooot of questions so I will try to stick to the ones related to the topic 

 

I'm 26 and I'm from Porto, Portugal. Two months ago I felt very very bad: brain fog, horrible bone pain, extreme fatigue, gas, back pain etc. etc. etc. After two months of running into the ER and doing different type of exams, they told me it was a virus infection that was gone. I believed them and, as I felt better, I resumed my life. Some weeks ago I started to feel bad again and then it hit me. Gluten intolerance! So I cut gluten from my diet (at least I think I did... everything from the supermarket seems to have gluten!!!) and I started to feel significantly better!

 

Yesterday I ran the transglutaminase blood test but the result will arrive only one day after Christmas. As I read on the internet that it was better to eat gluten before the exam, I did it and I decided to eat today also. Big mistake! Now I'm feeling miserable  Even if I kind of had the back-to-gluten diet confirmation of the intolerance, it is possible for the test to come negative next week? If the answer is yes, what do you recommend? I'm not very fond of the biopsy option! 

 

Thank you in advance!

 

Best regards,

Cosmin

[NoGlutenCooties]

Hey hey,

 

I'm a newbie also and I have a loooooot of questions so I will try to stick to the ones related to the topic 

 

I'm 26 and I'm from Porto, Portugal. Two months ago I felt very very bad: brain fog, horrible bone pain, extreme fatigue, gas, back pain etc. etc. etc. After two months of running into the ER and doing different type of exams, they told me it was a virus infection that was gone. I believed them and, as I felt better, I resumed my life. Some weeks ago I started to feel bad again and then it hit me. Gluten intolerance! So I cut gluten from my diet (at least I think I did... everything from the supermarket seems to have gluten!!!) and I started to feel significantly better!

 

Yesterday I ran the transglutaminase blood test but the result will arrive only one day after Christmas. As I read on the internet that it was better to eat gluten before the exam, I did it and I decided to eat today also. Big mistake! Now I'm feeling miserable  Even if I kind of had the back-to-gluten diet confirmation of the intolerance, it is possible for the test to come negative next week? If the answer is yes, what do you recommend? I'm not very fond of the biopsy option! 

 

Thank you in advance!

 

Best regards,

Cosmin

 

Whether it is likely for the test to come back negative depends on several factors - how many antibodies were in your system before you went gluten-free (assuming there were any), how long you were gluten-free, how efficient your body is at getting rid of the antibodies, etc.  You'll just have to wait and see what the test results are.  As far as the biopsy, some doctors will not recommend a biopsy without a positive bloodtest first - I think that depends on what your symptoms are and how knowlegable your doctor is.  I know the thought of a "biopsy" is a bit scary but the endoscopy and biopsy is really no big deal.  As long as you treat your gut with respect for the week following the test, you'll be fine.

[pricklypear1971]

Contrary to what seems to be perceived, there isn't a "Celiac Club Card".

You don't have to give a medical history to everyone you meet, or even prove it to doctors.

Also, you can get all of the nutrient and other autoimmune tests run regardless of knowing you are Celiac.

You can test your genes, as mentioned above, to see if they add to the case.

If you go into the hospital and write "celiac" on your paperwork, no one will argue with you.

You can do all the things a conscientious celiac would do, from today forward. Nutrient tests, etc. you can even monitor antibodies (which some celiacs do, and some find it pointless).

Find a doctor who believes in you, and you trust. You are without a doubt gluten intolerant. I don't see anyone arguing with you about that.

As far as pregnancy, etc. recent research is showing untreated autoimmune disease and inflammation can be problematic. So, figure out your inflammation levels, vitamin levels, secondary ai disease if any. You manage symptoms and issues not a diagnosis title.

So, testing is your option. Just be aware you may may through that misery to come up -. Perhaps because antibodies and damage didn't have enough time to build, or the testing maybe incomplete/incorrect. Some people gave much worse symptoms going back on gluten.