To Have The Biopsy Or...?

[Kathleen Elizabeth Strawn]

So my husband's doctor advised us to go gluten free because he thinks my husband has celiac. However he's not 100% and, as you know, gluten free is rather tedious so after 2 months of it, my husband wants the answer on paper on whether or not he has it. The reason our doctor is not 100% is because I guess he didn't do ...whatever tests are required for the legit answer because he said that those are not 100% correct results anyway so might as well go gluten free and see if you feel better. Well, my husband has a really dreadful back and right before he went gluten free it was bothering him so much he couldn't sleep. Since going gluten free, although he hasn't noticed much difference in his bathroom problems his back pain has gone away (my guess was that the intense inflammation the gluten may have been causing - his result was 2.28 inflammatory, normal is 0.00-0.50, was what was making his back so painful...so if he's less inflammed from no gluten, less back pain?? make sense?) and as far as his bathroom problems, they would always come and go anyway, and he did accidently ingest gluten a couple weeks ago and i heard that if you're diagnosed when you're older (he's 26), it may take up to 6 months or something to start feeling real results..

again, not sure what blood tests were taken, i have a paper here that says Gliadin IgA 1.06, normal is <0.91 and Gliadin IgG 1.52 normal is <0.91 .... i don't know if those have to do with celiac? Also, he has low vitamin D. Other suspicions are that although he's immediate family has never actually been diagnosed his mom has severe anemia that I assume, if he really has celiac, is actually misdiagnosed and is really celiac. Also his grandfather has the same stomach problems and his mom's cousin actually IS diagnosed with celiac.

So, again, he wants the for sure answer, and my only fear is that the test results will come back saying he doesn't have it but that those will be incorrect results and he'll start eating gluten again because he thinks he doesn't have it but he really does.... make sense? Should he take the biopsy? if yes, then he should probably eat gluten again before hand right? he has been gluten free for 2 months, how long should he eat gluten to make sure the test results are as accurate as possible?

Thank you SO MUCH to anyone who read this whole thing and can help!! really appreciate it.

[iamgf]

I was diagnosed by blood test and biopsy. But if I had it to do over again I would skip the biopsy. It, as well as the blood tests, can result in false negatives. Which is something I didn't know when being diagnosed, but I also didn't know what gluten was.

His healing time could take a couple years, depending on how extensive the damage to his body is. Personally, I noticed some improvement within 2 weeks and each week I felt a tiny bit better. But, it took about 18-months before all of my symptoms abated, with digestive symptoms being the slowest to go.

It is important to note that each time a Celiac has gluten, they have to start the healing process all over again, even when hidden gluten and cross-contamination are the source of the gluten. And, even when they are contaminated by gluten and don't know it due to lack of symptoms.

Not being a doctor, I highly encourage you/him to walk through the blood test results line by line with his doctor. I have also provided two links below that you might find helpful.

In short, 2-months is honestly not enough time for his body to heal, so it is too early for him to be able to experience the amazing transformation that is possible with a gluten-free lifestyle. Not to mention the prevention (a gluten-free lifestyle) of long-term health complications that follow untreated Celiac.

You might find this article helpful - Open Original Shared Link

Here is a link to a fairly detailed article regarding the tests and reintroducing gluten.

So my husband's doctor advised us to go gluten free because he thinks my husband has celiac. However he's not 100% and, as you know, gluten free is rather tedious so after 2 months of it, my husband wants the answer on paper on whether or not he has it. The reason our doctor is not 100% is because I guess he didn't do ...whatever tests are required for the legit answer because he said that those are not 100% correct results anyway so might as well go gluten free and see if you feel better. Well, my husband has a really dreadful back and right before he went gluten free it was bothering him so much he couldn't sleep. Since going gluten free, although he hasn't noticed much difference in his bathroom problems his back pain has gone away (my guess was that the intense inflammation the gluten may have been causing - his result was 2.28 inflammatory, normal is 0.00-0.50, was what was making his back so painful...so if he's less inflammed from no gluten, less back pain?? make sense?) and as far as his bathroom problems, they would always come and go anyway, and he did accidently ingest gluten a couple weeks ago and i heard that if you're diagnosed when you're older (he's 26), it may take up to 6 months or something to start feeling real results..

again, not sure what blood tests were taken, i have a paper here that says Gliadin IgA 1.06, normal is <0.91 and Gliadin IgG 1.52 normal is <0.91 .... i don't know if those have to do with celiac? Also, he has low vitamin D. Other suspicions are that although he's immediate family has never actually been diagnosed his mom has severe anemia that I assume, if he really has celiac, is actually misdiagnosed and is really celiac. Also his grandfather has the same stomach problems and his mom's cousin actually IS diagnosed with celiac.

So, again, he wants the for sure answer, and my only fear is that the test results will come back saying he doesn't have it but that those will be incorrect results and he'll start eating gluten again because he thinks he doesn't have it but he really does.... make sense? Should he take the biopsy? if yes, then he should probably eat gluten again before hand right? he has been gluten free for 2 months, how long should he eat gluten to make sure the test results are as accurate as possible?

Thank you SO MUCH to anyone who read this whole thing and can help!! really appreciate it.

[Kathleen Elizabeth Strawn]

thanks iamgf, i will definitely look at those : )

[ravenwoodglass]

He actually already has proof on paper in the blood tests. Both were positive.

If he want to have a biopsy, which has a chance of being a false negative, he needs to go back to a full gluten diet for a at least a couple of months.

If he has only been gluten-free for a couple months he is still healing. The fact that his back is so much better does not surprise me. I saw my arthritis go into remission on the diet and all I expected to get out of it was relief from my daily and nightly D. I understand his frustration, the diet is hard to get used to but it is so worth it in the end.

[Kathleen Elizabeth Strawn]

so the IgG, IgA tests were the celiac tests?

[ravenwoodglass]

so the IgG, IgA tests were the celiac tests?

Yes.

[Kathleen Elizabeth Strawn]

Yes.

thanks, I appreciate your help....why, then, would my doctor have said he's not 100% sure it's celiac? strange

[ravenwoodglass]

thanks, I appreciate your help....why, then, would my doctor have said he's not 100% sure it's celiac? strange

Not really, your husbands positive results were on the low side. Many doctors are very reluctant to diagnose celiac. It is not unheard of for folks with a low positive to be told to continue to eat gluten so they get sick enough for a higher result on the blood panel. The same happens at times with the biopsies. Doctors will see blunted villi and tell the person to keep eating gluten until the villi are totally destroyed before they will diagnose.

You can't be a little bit celiac any more than you can be a little bit pregnant. A positive result is a positive result.

I hope he sticks with the diet.

[sandsurfgirl]

My blood tests were positive and I was sick as a dog. I refused to keep eating gluten and make myself miserable for a biopsy which is a gamble. If he wants the biopsy he has to eat like 4-6 slices of bread per day for a month or so and cause enough damage for them to detect it. Not something I was willing to do to myself.

Your husband's doctor sounds like a DREAM doctor. He knows how to read the results, realizes that the tests aren't all that accurate and is willing to diagnose based on blood tests and dietary response. He should be having long chats with all the idiot docs that many or most of us have seen.

There is a connection between gluten and inflammation big time. I know someone who does not have celiac disease but went gluten free for very bad rheumatoid arthritis. He is off of meds completely and has no pain. He's a doctor, too. He is WAY into the benefits of gluten free not just for celiac and intolerance. Then there are all the kids with autism and ADHD who have improved on the diet.

Your husband has a great doctor and he should listen to him. He's one of the few I've heard about who knows something about this.

[ravenwoodglass]

There is a connection between gluten and inflammation big time. I know someone who does not have celiac disease but went gluten free for very bad rheumatoid arthritis. He is off of meds completely and has no pain. He's a doctor, too. He is WAY into the benefits of gluten free not just for celiac and intolerance.

He may have had RA the whole time and not celiac. My celiac associated gene is considered to be an RA gene most of the time here in the US. In other countries it is acknowledged to be a celiac associated gene but doctors here are a bit slow. I was very thankful that no gene testing was done on me prediagnosis as I would have been diagnosed with RA with IBS (which coincidentally is often present in folks with RA, duh) I would have been put on RA meds and stopped looking and most likely would not be alive by now.

[sandsurfgirl]

He may have had RA the whole time and not celiac. My celiac associated gene is considered to be an RA gene most of the time here in the US. In other countries it is acknowledged to be a celiac associated gene but doctors here are a bit slow. I was very thankful that no gene testing was done on me prediagnosis as I would have been diagnosed with RA with IBS (which coincidentally is often present in folks with RA, duh) I would have been put on RA meds and stopped looking and most likely would not be alive by now.

That is scary! RA runs in my husband's family and if he gets it he said he will go gluten free right away. So far he is fine.

[ravenwoodglass]

That is scary! RA runs in my husband's family and if he gets it he said he will go gluten free right away. So far he is fine.

You may want to suggest that they get screened for celiac. I am someone who believes all should be screened, as some countries that are more for preventative medicine and less for pumping their population full of drugs already do. I believe the large numbers of undiagnosed celiacs in the US is a strong contributor to the fact that folks in the US are some of the 'sickest' in the world and our average life expectancy is going down.