Questions To Ask

[cmc811]

Quick history:

 

*List of symptoms that can't be explained

*ttg iga value of 7 (anything over 4 positive, but 4-10 considered weak positive)

*Total iga normal (don't have exact values in front of me at the moment but they were in middle of range)

*ANA 1:40 speckled but all confirmation tests for different antibodies negative so Lupus and other disorders ruled out

*TSH 2.17

*Free T4: 0.8 (0.5 minimum of normal)

*Free T3: normal (again don't have lab report in front of me at the moment but it was in the top 1/3 of range)

*2 thyroid antibodies checked and both well within normal range

*Have been gluten-free post biopsy which was 1 week ago and feel much better but I do have a cold at the moment so energy, fatigue, brain fog can't be accurately assessed at the moment.

 

I have had the endoscopy/biopsies but don't have the results yet. I'm compiling my list of questions for each result. If it's positive then I really don't have many questions, but if it's negative I'm perplexed. What should I ask for? Since my ttg was so close to the negative range I'm afraid it will get the brush off and they'll tell me it was a false positive and I don't have Celiac. Should I ask for the gene test in that case? Run the ttg again, dgp, ema? Pre-biopsy neither my PCP or GI felt additional blood tests were necessary since ttg was positive so that is all that was done. The one issue with additional bloods is my current gluten-free status but since I haven't been off it long I could start eating it again for a week or so and then have the blood draw.

 

Thoughts? I just want to be prepared when the phone call comes which I'm expecting tomorrow.

 

Also: what about my thyroid tests? I know the optimal range for TSH is closer to 1.0 and my free T4 certainly isn't in the optimal range since it is at the bottom instead of the top of the range, but since antibodies were negative the doctor is saying all is normal. She told me pre-test that even if the antibodies had been positive they wouldn't treat for hypo because my tsh is technically in the normal range. I had to persuade her to even order the thyroid antibody tests.

[skelly247]

Okay, here we go.

*Ask for copies of ALL your results when you go in, one doctor might analyze them one way while another could analyze that same info differently.  Plus, it's always good to have copies for your own records. 

*Make sure they took enough samples (I believe they're supposed to take 6-8).  Celiac damage can be patchy sometimes.  If they sampled a healthy patch you'll come up with a false negative.

*Someone told me when I posted similar questions that there is no such thing as a "weak positive", that's like saying you're weakly pregnant, you're either positive or you're not.

*30-40% of the american population carries at least one celiac susceptibility gene.  The most that a gene test can do is rule OUT celiac, not confirm a diagnosis.

*If you do come back negative on the biopsy and want to rule out celiac, the other blood tests would be a good idea (don't forget the total serum IgA because 5% of celiac's don't have enough IgA to make the IgA tests actually valid (I was one of them )), just make sure you do a week or two of heavy gluten (since you've only been off it for a week). 

 

As far as thyroid tests go, my TSH levels are almost at 4 and my doctor still was hesitant to give me thyroid medication so you might have problems getting your doctor to side with you.  


 

[cmc811]

Thanks for your input.

 

Just to clarify, I do have all my results I just didn't have them in front of me while I was typing. I actually can view all my tests results with ranges online and can reference them at anytime, which is super handy! Also other doctors have easy access to them as well.

 

My total iga was in the middle of the normal range so I am not deficient.

 

I will definitely ask how many samples were taken, but what if she says "only 2".....then what? Do I have to urge her to repeat the procedure and follow current recommendations? I don't imagine that conversation would go well so maybe I would be better off going to a different GI.

[skelly247]

When I went to my doctor and told him I thought the problem was gluten, he said why bother testing, the treatment is the same regardless, if gluten makes you feel sick, don't eat it.  I wanted to know for sure if that was the problem or if it was all in my head so he agreed to do the celiac panel but it was more for my own knowledge and to make my family take me seriously when I say I can't eat something.  If you know that removing gluten from your diet makes you feel better, regardless of the outcome of the tests, I would remove gluten.  You very well could have non-celiac gluten intolerance which is a negative on an antibody test and a clean intestinal biopsy but the outward symptoms of celiac disease.  When it comes down to it, celiac and NCGI have the same treatment, removing gluten! 

[cyclinglady]

I have functioned very well on a TSH that's close to a 3.  I have Hashi's (almost 20 years) and I'd take that over getting hyper (experienced wild thyroid swings for a year prior to my celiac disease diagnosis).  celiac disease?  I tested "mildly positive" and my biopsy showed Marsh Stage IIIB (moderate to severe damage).  And if by chance they didn't catch it (let's hope they took more than six samples…..), you can always try going gluten free for six months to test it out.

 

I am formally diagnosed, but my husband is not.  He went gluten free at the advice of his GP and my allergist 13 years ago.    He knows gluten makes him sick and refuses to do a gluten challenge.  I can not blame him!  I don't think we, as a family, would survive a challenge.

[cmc811]

I definite will remain gluten-free. The reason I want to pursue a diagnosis is for the benefit of my kids. I've posted a bit about my struggles but I suspect my 5 year old has celiac but his ttg was negative (total iga normal) and his PCP doesn't think further testing is necessary. I asked for DGP by name with several links supporting the use of it with the ttg for better diagnostic coverage and she flat out denied the request.

 

My fear is others won't take precautions to keep him safe without the diagnosis. I can keep him gluten free at home but school, daycare, grandma's, etc could be tough.

 

Then there is my 3 yr old who is asymptomatic as far as I can tell. What if he has "silent" celiac and is never tested because there is no confirmed family history? If I can be officially diagnosed it puts a little more in my arsenal to persuade doctors to test and diagnose them if necessary.

[cyclinglady]

Yes, my husband would be the first to admit, that I have had it much easier going gluten free with family, friends and medical with my celiac disease diagnosis.  I waited until this January to have my pre-teen daughter tested.  We are self-employed and in the past it's been hard getting individual health insurance due to my Hashimoto's Thyroiditis diagnosis and now, celiac disease.  

 

She tested negative.  Our family GP/PCP ordered a complete celiac blood panel (took copies of material from the University of Chicago website in hand).  She'll get tested in three years -- sooner if she has any symptoms (mine was just anemia).  Our doctor never hesitated!  I find that submitting things in writing seems to get everyone's attention!  

 

If you get your formal diagnosis, then request the full celiac blood panel for your 5 year old at the very least!  Put your request in writing and send if certified mail.  The tone of the letter should be nice and sweet, but assertive!    If they still refuse, my daughter's complete Celiac panel lab charges were $400.  Our insurance negotiated it to $65 dollars.  So, you can always barter with the lab.  It might be worth it!  

[NoGlutenCooties]

Just wanted to add that one of the benefits to getting the endoscopy is that they test for other issues too - not just Celiac.  It's good to know you're not dealing with something else on top of gluten issues.  Also, there's nothing keeping you from just telling people that you/your child has Celiac.  They don't need to know that the doctor couldn't/wouldn't confirm it - it's really none of their business.

[cmc811]

Our family GP/PCP ordered a complete celiac blood panel (took copies of material from the University of Chicago website in hand).  She'll get tested in three years -- sooner if she has any symptoms (mine was just anemia).  Our doctor never hesitated!  I find that submitting things in writing seems to get everyone's attention!  

Unfortunately, I did submit to her lots of reputable websites and studies saying that the ttg and dgp together provides the best accuracy rather than just ttg alone, but it didn't do any good

[cmc811]

Just wanted to add that one of the benefits to getting the endoscopy is that they test for other issues too - not just Celiac.  It's good to know you're not dealing with something else on top of gluten issues.  Also, there's nothing keeping you from just telling people that you/your child has Celiac.  They don't need to know that the doctor couldn't/wouldn't confirm it - it's really none of their business.

I did have the endoscopy, which looked normal, but haven't received pathology results yet.

 

I can't even get the pedi to order the dgp for my son so asking her for a referral to get a scope done will never happen! I think I'm going to make him an appt with my doctor (general practioner) and see what her opinion is. SHe's more open to running tests the patient asks for. I asked for complete thyroid studies including antibodies for myself and she didn't think it was necessary but did it anyway since it made me feel better.

[cmc811]

Okay so my fear is being realized.....biopsy was "equivocal". Exact message from doctor was:

 

"The biopsies of the small bowel was somewhat equivocal. It showed an increased in some inflammatory cells called lymphocytes but there was no evidence of villous blunting (which is the classic feature for celiac).

I agree with you since you feel better on a gluten free diet, I recommend avoiding gluten. "

 

So......what next? I have asked for copies of the endoscopy report and pathology report so I will have those soon. The only Celiac blood test I had done was the ttg-iga (result 7 with anything over 4 positive). I read that other conditions can cause a slightly elevated ttg and increased inflammation in the lympocytes without blunting, but how are those conditions ruled out. As far as I'm concerned I will be gluten-free but I really have some decisions to make regarding my kids and a more convincing diagnosis for myself would make those decisions easier.

[GottaSki]

Increased lymphocytes is Stage One of the Marsh Scale used in Celiac Disease...the problem being Stage One and Two are not specific to Celiac Disease.

 

If the pathology report mentions increased crypt size or hyperplastic crypts -- the crypts are the spaces between villi -- in Stage Two these spaces become larger - even if villi atrophy (flattening) is not present.

 

While Stage 1 and 2 are not specific to Celiac -- if you combine them with the positive tTG-IgA and positive response to the complete removal of gluten it is highly likely you have Celiac Disease that 1) either is in early stages or 2) the damage in the small intestine is spotty and was missed during the endoscopy.

 

It is a tough place to be in....yet if you have caught it before major damage...that is a very good thing.

 

Can't remember if you had gene testing -- if you have the genes, a positive antibody test, the first stage or stages of Marsh Scale and positive response to diet -- you have a good case for a celiac diagnosis and should have your children tested every three years, more often if symptoms arise.

 

I do remember the trouble you have had with your pediatrician, so I would find a new one and simply say you had positive celiac antibody tests or add that endoscopy revealed early stage celiac disease (whichever you are comfortable saying) and need your children tested as you'll be taking the house gluten-free due to your health needs -- none of my kids had to prove I was diagnosed...not when I had the teens tested and my adult daughter simply told her doctor that I was diagnosed and they tested her.

 

Your kids may not have any positive antibody tests, but if their symptoms improve you should be able to make a case for diagnosis of them -- if not celiac disease, then NCGS.  New tests are on the horizon...so just get as much data as you can now so that you'll have it in the future when new tests become available.

 

One of my biggest frustrations is when a patient has positive antibodies, symptoms and measurable indications of early celiac disease in the small intestine that their doctors want to wait for villi atrophy to diagnose -- sorry, but that waiting period doesn't only damage the small intestine -- it can cause numerous symptoms throughout the body and greatly diminish quality of life.

 

Ok, rant done

 

I understand your frustration, but try to focus on the fact that you likely caught it early

[cmc811]

 

One of my biggest frustrations is when a patient has positive antibodies, symptoms and measurable indications of early celiac disease in the small intestine that their doctors want to wait for villi atrophy to diagnose -- sorry, but that waiting period doesn't only damage the small intestine -- it can cause numerous symptoms throughout the body and greatly diminish quality of life.

 

Ok, rant done

 

I understand your frustration, but try to focus on the fact that you likely caught it early

 

EXACTLY! I have no intentions of ever eating gluten again for myself. It's my kids that concern me without a one way or the other diagnosis.

 

I did not have the gene test but I was going to ask my doctor about it. I do think it could be helpful in making the jump to a full diagnosis. Of course the other side of that is that if the gene test is negative that just muddies the water even more....

 

The good news is that I did get in touch with a pediatric GI that was recommended to me by another parent with a celiac kid and he is willing to see my son without a referral from the pediatrician. That appt is set for the 24th. Doesn't address the issue with the pediatrician but its a work around for now while I try to find a new pedi.

[GottaSki]

 

The good news is that I did get in touch with a pediatric GI that was recommended to me by another parent with a celiac kid and he is willing to see my son without a referral from the pediatrician. That appt is set for the 24th. Doesn't address the issue with the pediatrician but its a work around for now while I try to find a new pedi.

 

This is good news....we must first take care of our families....then educate when an opportunity presents itself.  Quite frankly, this pediatrician dismissed your very good attempt to provide correct celiac testing knowledge...there really is nothing left but to find a new doctor for your children.

 

As for gene test...in our family it was helpful because my younger kids were negative with many symptoms...knowing they had at least one copy helped them make their decisions regarding gluten....they were teens, so it really had to be their decision.

 

The genes associated with gluten sensivity have expanded beyond DQ2 & 8....I think they are 3 and 9....but you'll want to check into that if you decide to move forward with gene testing.

 

If the gene test is negative....you aren't in a more confused situation.  If removal of gluten improves you or your children's health...whether it's called celiac or NCGS the end game is the same...complete avoidance of all gluten.  That said I do completely understand your apprehension. 

 

Good luck with the new Ped GI