6 Mo Blood Work - Labeled "Non Compliant"

[StressedByCeliac]

I am so stressed and frustrated! I was diagnosed with Celiac last October. I have been vigilantly gluten free since diagnosis. I did not have a "miraculous" improvement in my health as so many people told me I would. I do feel better today then I did 6 months ago, but it's been little steps.

Earlier this week, I had my second set of blood tests to see how things were going. My doctor's office called me and told me that the blood work shows I have been "non compliant" with my gluten free diet. I can't tell you how devastated I am. I feel like I'm starting all over again. What does my "non complaint" diet look like? I only eat single ingredient foods unless they are specifically labeled gluten free, or that I have researched with the vendor. When I travel, I pack all my own food. I don't eat at other people's homes, even skipping holiday meals with extended family. My husband and children are gluten free, as I've banned all gluten containing food from the house. I have eaten out less then 5 times in the last 6 months and only at restaurants that have excellent reputations for gluten free.

When my doctor's office called, they asked if I wanted to meet again with a nutritionalist. Honestly, no, I don't. The woman I met with after my diagnosis knew less about celiac then I did after reading through the Celiac Disease Center's welcome packet, that I registered for because I had to wait a month to see a nutritionalist. Then they asked me if I was eating bread, or pasta, or pizza. As though I was a total idiot.

I'm frustrated and don't know where I'm going wrong, and I don't feel like I'm going to get any help from my doctor, who I'm still waiting to call back since they didn't know what to say after I told them I was following a gluten free diet.

The one area I have been lax in is prescription medication. I'm trying to track down whether any of the 3 meds I'm on could be the cause of the issue, but given that we are heading into a holiday weekend, I get to simply sit and stew until Monday.

Any insight into what else to try next?

Initial blood work from Oct:

TTA IgA = 34 (High) TTA IgG = 59 (High)

Blood work from this week:

TTA IgA = 6 (Normal); TTA IgG = 25 (High)

[tessa25]

Those numbers are fantastic for 6 months! Keep up the good work. As long as your numbers are going down your doing fine. And your TTG IGA is normal, fantastic.

[ravenwoodglass]

You haven't even been 6 months gluten free. The fact that your IGA is in the normal range shows that you are doing pretty good on the diet. It can take time for antibody levels to get back to normal levels and your IGG is half what it was at diagnosis.

Do read the Newbie 101 thread at the top of the Coping section just to be sure you are not missing anything. Also you mention that you are still having symptoms are you eating oats? dairy? soy? those are common intolerances for some of us. Maybe try eliminating them and then adding them back in one at a time and see if you notice a reaction.

Try not to let whomever said you were non-compliant bother you. IMHO they did follow up testing too soon.

[Audrey’s Mom]

My daughter was diagnosed via scoping and biopsy in August.  Her levels in June were over 100.  She’s now at 28 when she was tested earlier this month.  It sounds like you’re on track and your numbers are lowering.  My daughter’s Dr. was pleased with her results.  Hang in there.  We’ve been told it could easily take a year to start to feel better.

[Ennis-TX]

I noticed after a exposure it can take about a month or more for my symptoms to go away in some areas. Others have the same thing, antibodies can take months to go down. I have seen many over the years where some take longer, if you have a tiny amount of gluten slipping in it can raise the numbers a bit. As Raven suggested double check everything, is you makeup and shampoo safe? Might sound retarded but if you touch the stuff then your food you will get slight CC.  Is a condiment jar CCed? Perhaps a common piece of cook ware....I CCed a hand blender once and kept making myself sick for awhile til I tossed it. I have also ran into "Gluten Free" foods that were made on equipment that handled wheat and I got sick then my Nima flagged it to me. I have also have certified gluten free hemp protein make me sick after eating it for a week then the Nima flagged it when I tested it...took over 2 months to recover from each of those exposures in the last half year....and I have been on this diet for almost 5...it happens to the best of us.

[pikakegirl]

First I send my sympathy. 10 years ago i was diagnosed and sent home being told dont eat gluten with no health plan or follow up. I took it upon myself to research like a maniac. It took 6 months for my blood work to get normal. I too began by eating single ingredient foods, dont eat out or anything anyone else made. I have silent Celiac so cant afford to risk trying foods since i have no way of knowing if i was glutened. Please dont blame yourself, this is a hard disease to manage. I even Elisa tested each food as i added it to my diet such as rice or rice noodles from a factory. I have not found any perscriptiin drug that has changed my 6 month blood work. Over the counter meds and supplements are more risky. I got much worse at first and thought i had refractory sprue but i was just healing which feels like dying in my case. I lost 90 pounds after gluten free. I started to turn around at year 7. Every journey seems unique and handling the mental aspect takes lots of hope, stamina and degerminatikn to love and help yourself. I have not found any of this from the medical community as of yet. This group helps me all the time even 10 years in i learn new helpful things here. You can do this! The body wants to heal and is a remarkably great at it. Your numbers are going in the right dirctikn so you are suceeding!

[StressedByCeliac]

I want to thank everyone who responded. I am still eating dairy (not a lot) and have never noticed an issue with it. I confess I don't know about soy - I haven't paid a lot of attention to what does or does not have soy. I have (not often) eaten other grains - corn meal, oats, quinoa, etc - but have always stuck with certified gluten-free varieties. I have not tackled cosmetics, skin care, hair care, etc. I did get rid of my stoneware and cast iron when cleaning out the kitchen, but most of the rest of my cookware and utensils were not replaced. 

In general, I guess there's always *more* to do. I will also go back and re-read the Intro and take a pass through my cabinets to make sure I've been as vigilant as I think I have.

I guess my biggest frustration is that I was just starting to emotionally feel OK with the whole never having a "real" pizza again and this just felt like a slap in the face. And it highlights again the lack of knowledge in the medical community around this disease - and actual support for those managing it.

Taking a deep breath... and carrying on.

[kareng]

4 hours ago, StressedByCeliac said:

I am so stressed and frustrated! I was diagnosed with Celiac last October. I have been vigilantly gluten free since diagnosis. I did not have a "miraculous" improvement in my health as so many people told me I would. I do feel better today then I did 6 months ago, but it's been little steps.

Earlier this week, I had my second set of blood tests to see how things were going. My doctor's office called me and told me that the blood work shows I have been "non compliant" with my gluten free diet. I can't tell you how devastated I am. I feel like I'm starting all over again. What does my "non complaint" diet look like? I only eat single ingredient foods unless they are specifically labeled gluten free, or that I have researched with the vendor. When I travel, I pack all my own food. I don't eat at other people's homes, even skipping holiday meals with extended family. My husband and children are gluten free, as I've banned all gluten containing food from the house. I have eaten out less then 5 times in the last 6 months and only at restaurants that have excellent reputations for gluten free.

When my doctor's office called, they asked if I wanted to meet again with a nutritionalist. Honestly, no, I don't. The woman I met with after my diagnosis knew less about celiac then I did after reading through the Celiac Disease Center's welcome packet, that I registered for because I had to wait a month to see a nutritionalist. Then they asked me if I was eating bread, or pasta, or pizza. As though I was a total idiot.

I'm frustrated and don't know where I'm going wrong, and I don't feel like I'm going to get any help from my doctor, who I'm still waiting to call back since they didn't know what to say after I told them I was following a gluten free diet.

The one area I have been lax in is prescription medication. I'm trying to track down whether any of the 3 meds I'm on could be the cause of the issue, but given that we are heading into a holiday weekend, I get to simply sit and stew until Monday.

Any insight into what else to try next?

Initial blood work from Oct:

TTA IgA = 34 (High) TTA IgG = 59 (High)

Blood work from this week:

TTA IgA = 6 (Normal); TTA IgG = 25 (High)

Your doctor’s office are idiots.  Those are going in the right direction.  See how they are in another 6 months.  Also, do you have any other autoimmune diseases that might impact them?  

 

Maybe you did mess up the first month or so... that is to be expected.  Also, antibodies can continue to climb for a few weeks when you first go gluten-free.  There isn’t a lot of research on how long it takes to stop making antibodies when gluten-free.  The researcher said that was an interesting side finding to their study, but that wasn’t what they were looking at so they didn’t keep following the test subjects.

 

a study was done not long ago that found that almost no medication -prescription or over the counter , contained gluten.  You should still check, but it’s probably not that.  

[psawyer]

I am not aware of any med, whether OTC or by prescription, that contains gluten.

[Gemini]

I agree with Kareng........your doctor’s office clearly have no clue what they are talking about and could certainly be classified as idiots.  Your numbers are fine.......really.  In fact, if they were really that good at what they do, they would know to  run more than the paltry tests that are not really for compliance.  They should also be running the DGP which actually tests for dietary compliance.  It is the test to see reaction to gluten in your diet.  The tTg tests for damage to the intestine and we all know how long that can take to get to normal. But a 6 on the IgA, from a high of 34 in only 6 months and they think that is non-compliant????????  In what universe?

Keep on doing what you are doing because you are doing things right.  Do not let this set you back mentally.  You may want to get a new doctor or at least have him tell his office staff to educate themselves before opening their mouths.  Keep calm and carry on.......you’re good!

[Johnny55400]

14 hours ago, StressedByCeliac said:

I am so stressed and frustrated! I was diagnosed with Celiac last October. I have been vigilantly gluten free since diagnosis. I did not have a "miraculous" improvement in my health as so many people told me I would. I do feel better today then I did 6 months ago, but it's been little steps.

Earlier this week, I had my second set of blood tests to see how things were going. My doctor's office called me and told me that the blood work shows I have been "non compliant" with my gluten free diet. I can't tell you how devastated I am. I feel like I'm starting all over again. What does my "non complaint" diet look like? I only eat single ingredient foods unless they are specifically labeled gluten free, or that I have researched with the vendor. When I travel, I pack all my own food. I don't eat at other people's homes, even skipping holiday meals with extended family. My husband and children are gluten free, as I've banned all gluten containing food from the house. I have eaten out less then 5 times in the last 6 months and only at restaurants that have excellent reputations for gluten free.

When my doctor's office called, they asked if I wanted to meet again with a nutritionalist. Honestly, no, I don't. The woman I met with after my diagnosis knew less about celiac then I did after reading through the Celiac Disease Center's welcome packet, that I registered for because I had to wait a month to see a nutritionalist. Then they asked me if I was eating bread, or pasta, or pizza. As though I was a total idiot.

I'm frustrated and don't know where I'm going wrong, and I don't feel like I'm going to get any help from my doctor, who I'm still waiting to call back since they didn't know what to say after I told them I was following a gluten free diet.

The one area I have been lax in is prescription medication. I'm trying to track down whether any of the 3 meds I'm on could be the cause of the issue, but given that we are heading into a holiday weekend, I get to simply sit and stew until Monday.

Any insight into what else to try next?

Initial blood work from Oct:

TTA IgA = 34 (High) TTA IgG = 59 (High)

Blood work from this week:

TTA IgA = 6 (Normal); TTA IgG = 25 (High)

I am in the same about situation. After 2 months of gluten free diet my TTG (Anti-Transglutaminase)  is now a "6". Before it was 34. My doctor told me that it was a great improvement. Si I will assume the same in your case. My  endomysal antibody titer is : 140 now. My doctor told me that it was not a problem. She know wants me to be 8 weeks on regular diet with gluten. She wants to do another endoscopy and blood test. Not sure exactly what she wants to test...

[cyclinglady]

1 hour ago, Johnny55400 said:

I am in the same about situation. After 2 months of gluten free diet my TTG (Anti-Transglutaminase)  is now a "6". Before it was 34. My doctor told me that it was a great improvement. Si I will assume the same in your case. My  endomysal antibody titer is : 140 now. My doctor told me that it was not a problem. She know wants me to be 8 weeks on regular diet with gluten. She wants to do another endoscopy and blood test. Not sure exactly what she wants to test...

Something is definitely not adding up.  Your previous posting stated an elevated TTG (31) and EMA.  Your biopsy was suggestive of celiac if I can recall.  No celiac-savvy GI would make you go back on a gluten diet and then do everything all over again.  You should know exactly what she wants to test.  

Either you are not communicating everything correctly to us or your should seriously consider getting a new Gastroenterologist.  

[Johnny55400]

My Gastroenterologist is quite competent and has excellent reviews on several sites. I am just stating what the blood report said: after two months on a gluten free diet my TTG went from 31 to 6. Since I do not have any symptoms, she wants to make sure that I do have celiac. Before my first test, I was taking a huge amount of Naproxen and I asked her if that could have an impact on my elevated TTG. She was not sure. After two more months on gluten diet and no naproxen if my TTG is up again, it will confirm that I do have celiac. I am not a specialist and new on this. I hope that what she wants to do makes sense. 

[GFinDC]

Hi Johnny,

Perhaps you can ask for a consult by another doctor?  Going back on gluten for a testing is called doing a gluten challenge.  The University of Chicago celiac center recommends a 2 week gluten challenge for an endoscopy and 12 weeks for blood testing.  Open Original Shared Link

Rather than put your body through a gluten challenge and suffer more possible damage to your body, it makes sense to seek a 2nd opinion first.  Try to find a celiac doctor in your area to review your first tests and see what they think.  It sounds like your doctor is not real familiar with celiac diagnosis IMHO.

While you don't have symptoms, that doesn't mean damage isn't happening.  Your condition of not having symptoms is called silent celiac.

The reason I suggest avoiding a gluten challenge is that often people, who start the gluten-free diet and then go back on gluten have worse symptoms than they did before.   And it can take months to recover from a gluten challenge.

If your first test endoscopy was suggestive of celiac and your blood antibodies showed improvement when gluten-free, then there seems little doubt that you have celiac disease IMHO.

[Johnny55400]

Thanks for your advice. I am going to think over it. 

 

[PrincessBella]

One thing I have been learning is trust nothing unless you know what every ingredient that is in it. Some Packaged foods claiming to be gluten free can lawfully contain 0.03% of gluten. A small enough amount you would think, but learned this only after I feasted on some gluten free crackers (yay I thought).  Also although a food should be gluten free if it is not manufactured in a gluten free facility, a good example Quaker Oatmeal. They do have a gluten free but unless it specifically says on the package it is not...then read the ingredients. 

It has been almost a year and I just realized the peanuts I ate had maltodextrin in them which is wheat. It is hard because it is everywhere, peanuts are supposed to be a safe food but not the planters brand

Hope this helps and good luck!

[Scott Adams]

Maltodextrin, in the USA anyway, is made from corn and is gluten-free. Also, in the USA and Europe the standard to be labeled GF is 20 ppm, which is much less than .03%. 

[Mireille]

There are some vitamin supplements that contain gluten - for example, what was once my favourite multi-vitamin (One-a-Day VitaCraves Gummies with Omega-3 and DHA). Fortunately, they state - right on the back label - "contains wheat."

I think the lesson is: always check the label on everything. It is really better to be safe than sorry.