Doctor Unable To Explain, Please Help

[dartmania2002]

Hello,

 

One year ago I was very sick for a prolonged time and finally went to the Doctorwho ran a series of blood tests and it was discovered that I had tested high for Celiac disease. I went to see a GI and had more blood work and an endoscopy to verify the blood test. After determining that I did in fact have this disease I was instructed to go on a gluten-free diet. At this time they told me my celiac panel was the highest they had ever seen... it was 152.27

 

 

Fast forward to September 2013 I return to the GI for a follow up, they discover that I have H pylori and put me on antibiotics, they also run my bloodwork again, some good news my celiac # has dropped to 89.91 I am on the right path.

 

 

Today I just called the Doctor to get the results of my blood work from last week..... 126.00!!!!   I have taken great strides to be gluten-free even switching to a Keto Diet, I never eat out or let anyone prepare my food..

 

How is this possiable? What else could cause these readings? Has anyone ever experienced anything similar to this? Thank you very much for taking the time to read this.

[bartfull]

Somewhere, somehow, gluten is sneaking into your diet. Time for some detective work. Check all medications and supplements, be sure you are not using an old pot/pan/wooden spoon/toaster. Check your shampoo/conditioner/hairspray/lotions. Check your lipstick/lip balm.

 

Is there ANYTHING new you are using since your September 2013 test? Are there gluten eaters in your house who might be "double dipping" in your butter/condiments? Is anyone using regular flour in your house? Is the silverware drawer near a food prep area where crumbs can drop into it?

 

Also, have you checked the ingredients on your old standby foods? Sometimes, depending on price and availability, companies will change the ingredients. Have you bought anything out of bulk bins at the store, where someone might use the wrong scoop and contaminate the whole bin?

 

I'm sure someone else will be along soon with other ideas I have missed. Put your thinking cap on and we will too, and together we will get to the bottom of this.

 

Oh, and welcome to the forum.

[dartmania2002]

Thank you very much for taking the time to reply to me so nicely! I have not changed my diet at all and in fact of become even more strict since Christmas time whem I cutout all cheetos and white popcorn that I had been eating way to many of!!

 

We check every new food for the label to say gluten-free as well. I don't eat any condiments, so that is out of the question. I also have gluten-free soap and shampoo. This is very frustrating to me on many levels! I was told by the doctor that anything over a 10 was considered high, so I have been concerned about my initial 156 and was thrilled that in the first 6 months I had cut it in half. It seams like I would have to be consuming an awful lot of Gluten to get the number back to the levels I had when I didn't know any better.

 

I called over to my GI and he wants to see me Thursday morning, so hopefully he has some insight to what is going on.

[cahill]

You may want to consider eliminating  any prepared gluten free products ( such as gluten free breads, mixes ,products made in shared facilitys   ect...) and stick with a whole foods diet.

In the US prepared foods that have a gluten free label are still permitted to have a small amount of gluten . This trace amount may not effect  most celiacs but those who are super sensitive may be effected.

You may be ( as I am ) a super sensitive celiac

[bartfull]

"We check every new food for the label to say gluten-free as well."

 

Unfortunately, not all foods that say gluten-free really ARE gluten-free. Rice Dream milk comes to mind - it has barley. And there are a host of other "gluten-free" foods that actually have a high level of cross-contamination. I know it would be a lot of work and a pain in the neck, but could you list the foods and brands that you eat?

[bartfull]

Oh yeah, do you eat oats? Even certified gluten-free oats bother some of us.

[bartfull]

Just thought of something else that may seem a bit extreme, but in my opinion, possible. I notice by your name, you play darts? (I do too.) I know that sometimes I'll be at a friend's house and we'll be playing. Sometimes someone will forget their darts, or for some other reason, they want to use mine. If they are snacking while the game is going on, I make really sure not to eat anything with my fingers after they have put their gluteny fingers on my darts.

 

Also, gluten kisses can get you. If your significant other has had beer or a sandwich and then kisses you without brushing thoroughly, you can get glutened.

[mamaw]

There  are  celiac  people  who  never  get  their  levels  down......also  dairy is broken down at the tips  of the villi too....

[dartmania2002]

Thanks again for all of the responses!! A few things I should have mentioned I am on a pretty strict Keto diet, so I don't eat any of the gluten-free processed flour such as breads and cookies and oats or even rice.

 

I consume little dairy beyond some cheese here and there.

 

Wife has also gone gluten-free, so house is 90% rid of it, the kids have sandwiches and such that are prepared in a different part of the kitchen.

 

I guess my thinking was before I knew all about having this disease I would drink many bears eat pretzels maybe eat a sub, wake up have toast maybe some pizza for lunch ect. ect. and my level was 156, I go gluten-free and it drops to 80, how in the world could it be back up so high again? It would seam to me I would have had to eat a loaf of bread and wash it down with an 18 pack of bud the night before the bloodwork...

[frieze]

??lab error?  missing decimal point?

[cahill]

??lab error?  missing decimal point?

that is a really good question  frieze. Maybe a second test to verify is in order .

 

 

dartminia2002,   you say you are on a strict keto diet ,, medical reasons?. Have you started any new meds in the past few months?

[squirmingitch]

_{How about the antibiotic for the H. pylori? Was it gluten free?}

 

_{I also strongly suspect a lab error. Perhaps your test got mixed up with someone else's? A re-test is in order.}

 

_{You mentioned your kids ~~~ kid kisses? Are you kissing them on the cheek where they may have put their gluteny hands? How about the pets? Is their food/meds gluten free?}

[dartmania2002]

I have an appointment with the GI tomorrow morning so I will bring up these points and take them from there.

 

As for the Keto diet, it works perfect for a gluten-free diet.

[cahill]

I have an appointment with the GI tomorrow morning so I will bring up these points and take them from there.

 

As for the Keto diet, it works perfect for a gluten-free diet.

Personally ,I found a ketogenic diet was not sustainable.You can eat gluten free without restricting your carbs to that degree. Eating paleo is a good example.  I would not recommend a ketogenic diet to any one .

 

But we are all different and we all have to find what works for us

[NoGlutenCooties]

On another thread somewhere someone else was trying to figure out where they could have possibly been glutened and it turned out they were getting their kitchen redone - drywall and other construction materials have gluten in them and the dust gets everywhere.  You breathe it in.  You swallow it.  You get glutened.  Any construction going on in your house or where you work?

[GFinDC]

Have you checked your vitamins and meds for gluten?  Also, gluten-free beers that remove the gluten (but still might have some) may be a problem. I suppose you have checked your teas and coffee or other drinks as well?  If not that is possible problem area.

[luvs2eat]

I'm sorry I don't have an answer for you regarding your test results... but my doc also told me he'd never seen a higher celiac panel! That was 10+ years ago... I'm guessing by now he's probably seen some higher ones as celiac is booming!

[nvsmom]

I'm another who's ttG test took a long time to come down. It was just about normal after over a year gluten-free, and while on mild steroids.    Some of us take longer.

 

Also, an elevated tTG can be caused by thyroiditis, diabetes, crohn's. colitis, chronic liver disease, and serious infections. I have thyroiditis and my blood glucose isn't what it should be so I'm guessing that that is what is keeping mine high as I KNOW I haven't been glutened. Just keep being careful and hopefully the doctor can offer some advice.

 

Best wishes.

[Gemini]

Another winning answer from nvsmom! 

 

To the OP....you may not be ingesting gluten at all.  Everyone always thinks people are being cc'd when their blood work comes back high but if that test is the tTg, it can most certainly be from another AI disease brewing or present, that is not diagnosed yet.  They should run the DGP also, in conjunction with the tTg, and that should tell you if gluten is sneaking into your diet. It doesn't sound like it to me so make sure both tests are done.  The tTg tests for intestinal damage and the DGP tests for gluten ingestion so if they haven't done both, you haven't been tested correctly.

 

Do not panic and good luck! 

[dartmania2002]

Hi again,

Thank you to all that have responded and I have leared a lot that I will talk to the GI about tomorrow!

It took the first six months to lower the 156 down to 80, and the next six monthes to aise it back up to 126, What I don't understand is if it is a gradual process or spikes up and down. So lets say I am at 80 and eat a piece of bread would that jump the next day above 100 or would it take months of me eating a loaf a day? I guess what I am saying how much does this flucuate and how fast?

[dartmania2002]

Ok, Doctors appointment is tomorrow morning, but I think I have a little more to go on already as I have been suffering from some rash like hive spots for the past month and a dermatologist has me on some cream, but while Googling some stuff I came across Dermatitis Herpetiformis and it is an exact match for what I have right down to the "Mirrored" rashes, meaning I have 2 on each calfs in the same spot as well as 2 on each arm in the same spot.

Now while I feel this is a significant find, it also leads me to believe like the elevated reading that I must be in contact with Gluten. I never knew that Celiacs had a 25% chance of this skin condition and that Gluten was also the cause....

Now onto finding the Gluten, which is a TOTAL Baffle, as NOTHING has changed in my diet, I don't really have a big variety as I have been heavily dieting and losing weight easily down to 195 currently. I make all of my own food and even track it. If it is some sort of cross contamination as suggested above, wouldn't it need to be a considerable amount to make these drastic symptoms?

My point being I have changed nothing since that last test yet almost doubled the # oh yeah and contracted a second allergy to Gluten that comes out on my skin.... This sucks LOL

[livinthelife]

On another thread somewhere someone else was trying to figure out where they could have possibly been glutened and it turned out they were getting their kitchen redone - drywall and other construction materials have gluten in them and the dust gets everywhere.  You breathe it in.  You swallow it.  You get glutened.  Any construction going on in your house or where you work?

My sneaky source of gluten turned out to be supposedly gluten free chips.

 

After I got down to my detective work because I couldn't figure out why I still had cramps and D, turns out my chips I thought were safe were manufactured on equipment that also processes wheat. It was a classic warning for me to stop processed everything. Maybe something like that you have as an occasional treat? Also my lipstick I always kept in my desk at work had gluten too.

 

 

Good luck, Detective!

[squirmingitch]

DH is NOT an allergy to gluten nor is celiac disease. DH is the skin presentation of celiac disease not an allergic reaction to gluten.

 

But it would seem to indicate you are getting gluten from somewhere.

[bartfull]

Does your wife use lipstick? Maybe you are getting glutened from her kisses. Or maybe she uses hairspray? A lot of hairsprays have wheat protein in them and if she sprays it where you can breathe it in, it will get in the back of your throat and you will swallow it. Check to see if she is using new brands of these things since you had your lower antibody count.

 

How about pets? Got a new one? Most dried cat and dog foods are full of gluten. When you pour it into the dish it creates dust. OR you could be getting gluten "kisses" from your pets. Even outdoor critters like chickens and rabbits eat foods that are full of gluten.

[RMJ]

So lets say I am at 80 and eat a piece of bread would that jump the next day above 100 or would it take months of me eating a loaf a day? I guess what I am saying how much does this flucuate and how fast?

Antibody levels won't fluctuate large amounts in a day. Probably would take weeks. Having said that, if the same blood sample is tested twice it could easily give readings that are different by 5% or even more.

Were all of the tests run by the same lab? A different lab could give very different numbers because they don't all use the same units.