Help With Test Results Please

[judysj]

Hello, I posted this a couple days ago but I think I posted in the wrong category. I've been reading from this site and forum for several months but never posted here before.

Please see my post below. In addition, I didn't mention that on Thanksgiving Day, after preparing dinner but before even serving it, I began having horrible stomach cramps and spent the rest of the evening either on the toilet with diarrhea or doubled over on the bed with the heating pad. I didn't eat anything that day but I did make cookies and other items that were not gluten free. I've read both that you can absorb gluten through your skin and I've also read it isn't absorbed through the skin. I have no idea. All I do know is something that day did me in and it wasn't anything I ate. I washed my hands after handling cookies, etc. Any help with this and my earlier post, below, is greatly appreciated.

Thanks!!!

Hi, This is my first post here. I've had 'issues' for some time and May 2010 I found this and other sites and began eating gluten free. Something happened during vacation in August...not sure what. When we came back, I went to my PCP who suggested a these tests for Celiac. Considering I had been gluten free and basically dairy free for the previous 3 1/2 months, I realize the blood work would not be as accurate as if I'd been eating normal up to this point. After coming home and feeling so badly, I ate a patty-melt from Steak and shake...bad, I know but it was sooooo good.

He ran a LOT of other tests including vitamin and other areas. He also ran the H-Pylori test. He said both the celiac and the h-pylori came back positive. I was on a two week treatment for the H-Pylori (which I could only continue for ten days...should have quit earlier due to the more serious side effects but I thought I had to complete it...pcp said to stop).

Still feeling really bad...never been anywhere near to the good health/feeling while eating gluten-free before vacation. He referred me for a consult with a GI and that appt is this week.

Can anyone tell me what the results below look like? I have seen so many different results, tests, and ranges on the net so I am just confused.

Name Value Reference Range

IgA Total, Serum 135.70 66.00-436.00

Tissue Transglutaminase IgA Ab 1 0-15

Gliadin IgA Antibodies 18 0-15

Gliadin IgG Abs 18 0-15

GI tests may consist of breath test for H-pylori, endoscopy for ulcers and celiac, and possibly colonoscopy. That's my guess. Any advice about what I should ask or request?

Thanks!

[cassP]

did u say you were gluten free for over 3 months before testing??? that could most definitely make your test results inconclusive- yet-> your antigliadin antibodies look to be positive. and your ttg antibodies look negative.

im not your doc, but i would say you are at least gluten intolerant.

btw- looks like you have a pretty good doc- i cant believe he initiated testing you for Celiac- most are dismissive.

[Keela]

If I'm cooking with gluten I usually wear a mask. I have glutened myself several times throwing flour around my house. Especially if I'm rolling out dough or dumping a new bag of gluten flour in an airtight container.

[Roda]

You very well could have inhaled some airborn flour and gotten gluten that way. Also you should wipe down and clean your kitchen since you were baking with regular flour. I have seen on different posts here that it can stay airborn for awhile before setting down on the counters etc. So cleaning immediatly after, while good to do, will not prevent the cc from the airborn after it settles.

[judysj]

Yes, over three months gluten free. I'd been doing my own research including here on celiac.com and I knew something was wrong with my stomach. I've always had anxiety/nervous stomach issues so one doctor (though a very good doctor...just not educated with celiac...but he will be when I go for my annual physical) would always want to treat the symptoms, although he did check for lupus.

So, early in May, I started gluten-free and later added dairy free after learning about how it hinders the healing process. I got so much energy back. I started dropping weight. Many things changed. The fibromyalgia symptoms were gone. If I had not become sick while on vacation in August, I would have probably never been tested.

But something happened and I really started feeling bad about a week before vacation. I didn't have as much energy as normal...not even as much as in previous years while eating gluten. After vacation it just got worse. First I called the doctor above and got an appointment, but after giving it more thought, I called another doctor closer to home...not my 'official' pcp. He knows I don't want meds, he had previously been in a pain clinic treating fibromyalgia, and he doesn't just treat symptoms...he looks deeper for the cause. He's awesome! I can email him about what is going on and he answers my email...during his lunch hour, after work, etc.

Anyway, I could go on about my doctor. He's in Hendersonville, TN and if anyone in the area needs more info, I'd been glad to give his name. I called him after calling my 'official' pcp and they had a cancellation the next morning. The rest is history. I still tested 'slightly' positive...enough for me as I know how I felt before gluten-free and I don't want to have to do the six week thing to get higher results...plus I had h-pylori. I took antibiotics for that but couldn't finish them and have been concentrating on eating better ever since.

I think I have every kind of flour available with the exception of regular, white (wheat) flour. The cookies were Toll House...the kind you just take out of the package and bake. But they were really moist and I don't know if you can or can't absorb that way. I have heard both ways.

I am going to get some plastic gloves like you would wear in a restaurant and I will try to find some type of mask for when I'm cooking for my husband or others. I do wipe down with soap and water or more often with a multi-purpose cleaner. Besides constant washing of hands, I've also become a hand-sanitizer nut. But I didn't realize about what might be airborne.

Thanks for the help. My G.I. consultation is tomorrow. We'll see what happens next. :-)

Judy

did u say you were gluten free for over 3 months before testing??? that could most definitely make your test results inconclusive- yet-> your antigliadin antibodies look to be positive. and your ttg antibodies look negative.

im not your doc, but i would say you are at least gluten intolerant.

btw- looks like you have a pretty good doc- i cant believe he initiated testing you for Celiac- most are dismissive.

[Korwyn]

My research over the last couple years finds that that you cannot 'absorb' gluten through the skin. However porous mucous membranes (lips) may be another matter.

As I'm sure you've read, many people develop a higher degree of sensitivity to gluten from CC after going gluten free. It is possible you are reacting to cross-contaminated cookware, dishrags, etc. Initially I had something very similar. I felt great for a while, then I started developing a huge issue with extreme sensitivity. Last year I got pretty sick when my daughter wiped up some spilled (dry) baby formula, then my wife used that same dishrag to wash a cutting board I prepped a roast on. Turns out the number two ingredient in the formula was derived from wheat. I also cannot use baking sheets, baking stones, pans, that have come in contact with gluten, unless they are stainless steel. Same thing for nylon cooking utensils. We no longer allow any gluten (or soy) containing products in the house except beer for when the boys come over, and that has to be kept out of the cooking area of the kitchen.

All of that said I do need to point something out that most people here will confirm: If you are healing from celiac disease related damage to your body (intestinal or other organs), you will almost certainly have many ups and downs. Sometimes it may feel like you are going backwards. It is easy to become so paranoid and fearful that you lose sight of the fact that it is probably normal. After the initial 'high' I experienced when I went gluten-free (look into the opioid effect gluten has on the central nervous system), there was a significant crash period. It took me over a year before my good days (on average) outweighed my bad days. However, understand too that I was one of those who presented almost exclusively on the neurological and psychological side up until the last couple years (prior to diagnosis) when the GI finally started to get into the mix too. So while my ups/downs may be extreme compared to some, you'll find that many with celiac disease experience exactly the same pattern. Don't let it get you discouraged, you will probably have them, but you DO come out the other side!

* Edited for clarity and typo

[judysj]

Thanks Korwyn,

Your post is very helpful. While I use lots of dishwashing soap and very hot water, I do use the same dish rag and towels to wash/dry. We don't have regular flour in the house but my husband does eat cookies (Oreos, etc.) and other snacks and cakes. I never really thought about this.

Also, I might give my husband a quick kiss after he's munched on cookies or drank a beer or something like that so the lip thing is a possibility.

I also have had a lot of the neurological/psychological issues. Several other doctors have had me on antidepressents over the years (which I stopped close to a year ago) as this particular doctor said I was not depressed just very full of anxiety. I still take Xanax, both a time release and one regular in the a.m. Without it, I would be so stressed I don't know if I could stand the day...I know others couldn't stand me. LOL! And with the RLS, TMJ, fibromyalgia pain, etc. I was also on Lyrica which I stopped. I had side effects from that too...can't really remember now what they were. Anyway, my point is that I can relate to what you are saying.

You mentioned that you do not have Soy in your home. Is that something that is another common allergy for celiacs? After I stopped dairy, I started drinking vanilla almond milk in the morning and I carry one of the small soy milks in my lunch just in case I feel like I need something extra.

I have my endoscopy Friday with biopsies of the small intestine and the stomach. I'm really tempted to go get a big burger with a bun just in case it might show up more but I don't like the thought of what it may do to my body (cramps, etc.)

Thanks so much for your post!!! It does give me hope. I don't particularly like the time frame... ...but it helps me know I may just be normal.

Thanks again,

Judy

(Oh yeah, when I went for the consult with the G.I. specialist, he suggested it may just be IBS. I told him what I thought of IBS and anything else that was just called a 'syndrome'. I told him it was nothing more than a catch-all for "We don't know what it is so this is what we are going to call it." See, that's the way I feel about the fibromyalgia too. I realize that the problem is really existent...I know it...I feel it...but don't treat the symptoms, find out what's wrong. I know there are things a lot of medical professionals are just not as educated about as others so if that's what he says, I'll go to a different G.I. specialist.)

My research over the last couple years finds that that you cannot 'absorb' gluten through the skin. However porous mucous membranes (lips) may be another matter.

As I'm sure you've read, many people develop a higher degree of sensitivity to gluten from CC after going gluten free. It is possible you are reacting to cross-contaminated cookware, dishrags, etc. Initially I had something very similar. I felt great for a while, then I started developing a huge issue with extreme sensitivity. Last year I got pretty sick when my daughter wiped up some spilled (dry) baby formula, then my wife used that same dishrag to wash a cutting board I prepped a roast on. Turns out the number two ingredient in the formula was derived from wheat. I also cannot use baking sheets, baking stones, pans, that have come in contact with gluten, unless they are stainless steel. Same thing for nylon cooking utensils. We no longer allow any gluten (or soy) containing products in the house except beer for when the boys come over, and that has to be kept out of the cooking area of the kitchen.

All of that said I do need to point something out that most people here will confirm: If you are healing from celiac disease related damage to your body (intestinal or other organs), you will almost certainly have many ups and downs. Sometimes it may feel like you are going backwards. It is easy to become so paranoid and fearful that you lose sight of the fact that it is probably normal. After the initial 'high' I experienced when I went gluten-free (look into the opioid effect gluten has on the central nervous system), there was a significant crash period. It took me over a year before my good days (on average) outweighed my bad days. However, understand too that I was one of those who presented almost exclusively on the neurological and psychological side up until the last couple years (prior to diagnosis) when the GI finally started to get into the mix too. So while my ups/downs may be extreme compared to some, you'll find that many with celiac disease experience exactly the same pattern. Don't let it get you discouraged, you will probably have them, but you DO come out the other side!

* Edited for clarity and typo

[ravenwoodglass]

I have my endoscopy Friday with biopsies of the small intestine and the stomach. I'm really tempted to go get a big burger with a bun just in case it might show up more but I don't like the thought of what it may do to my body (cramps, etc.)

You mention in a previous post that you have been gluten free for three months. This is going to give you a real good chance of a false negative. If you have had adverse reactions to gluten since you went gluten free and have seen some healing do keep up the diet. Neuro effects take longer to heal than the gut.

[judysj]

You mention in a previous post that you have been gluten free for three months. This is going to give you a real good chance of a false negative. If you have had adverse reactions to gluten since you went gluten free and have seen some healing do keep up the diet. Neuro effects take longer to heal than the gut.

Atually, I went gluten free in May. In August I got sick again...partly from H-pylori. I did cheat once after vacation because I felt so bad and I didn't know why and nothing sounded good to eat except something really bad...a patty melt from Steak-n-Shake. So other than that one time (to the very best of my knowledge) I have been gluten free for over 7 months...and dairy free for almost 4 months since I read that it can hinder the healing of the villi.

And yes, the chance of a false negative is what worries me. That's why I thought about eating 'bad' for a couple days hoping that might show more in the biopsy. But it's scheduled for Friday so I doubt I would have enough time. I still have the gut issues too. That's why I'm trying to learn. I felt fantastic until August, then when the h-pylori happened, everything else seemed to fall apart. I stuck with the diet. You know, I just want some sort of definitive answer. I wish I knew back in May to go straight to the doctor but I didn't think they would test for celiac and I've been so tired of wrong diagnoses in the past that I just did it on my own. As you all know...it's sooooo frustrating.

[judysj]

Hi again...it's me. I got the results of my biopsy today and they didn't show anything. I didn't expect them to actually since I've been gluten free for almost 8 months now.

Is the Anti-endomysial antibody (EMA-IgA) and the ELISA the same test? My GI sent me for more tests today, one was the anti-endomysial antibody test. The phlebotomist had to calls someone (the lab?) to find out which tube and how much they needed. That made me feel quite confident in the test process

[Roda]

Now I have to go for a complete GI CT scan tomorrow. (Also, I'm allergic to shrimp...should I do the contrast? I've been told by other medical professionals to just say "NO" to iodine, but I don't know what to do.)

Judy

There is a lot of controversy around this. Some Radiologists say that a reaction to shrimp and shellfish does not matter in regards to the iv contrast while others say it does. I am here to tell you from experience that I have injected people that are allergic to shellfish/shrimp. I asked one pt about being allergic to ANYTHING and she told me none, then after the injection she told me she forgot about shrimp and she had no reaction. I have also injected people that have been premedicated. I also have had patients react to the IV contrast with absolute no allergies what so ever. This is not to scare you and majority of people tolerate it just fine. Then there have been others I have not given it to based on their wishes and depending on the Radiologist for the day. Alot of people just don't get the IV contrast or are premedicated with steriods and benedryl 24 hrs prior to injection if there is a question regarding allergy. The IV contrast does give a more detailed exam, so you just need to decide what is right for you. For your peace of mind and to be on the safe side either don't do the IV contrast or get premedicated prior. If you choose the premedication route(this requires a RX from the doctor) you will probably need a driver since benedryl can cause drowsiness.

[cassP]

i would say it's pretty impressive- that you had already been gluten free for 3 months- and yet- your antigliadin iga & igg were positive! weak positive, but still positive.

regardless of what they dx u with- if you feel better off gluten, than stay off... after 3 months you were still making antigliadin antibodies- that means something.

[judysj]

Thanks to both of you for your responses...

I don't have 24 hours to pre-med before the test but I do want it to show up as clear as possible if there are issues. I'll talk with them so they can be ready just in case. I don't know what else to do at this point. I have to know...everyone here probably knows how I'm feeling.

And I agree...at this point I don't care what the biopsy showed as I know sometimes they can't get the right spots for biopsies. I felt better than I had in years until the H-Pylori reared it's ugliness...just haven't been the same since. My husband (very skeptical in most newer medical diagnosis) also sees the differences since being gluten free. It's been 8 months now and I'm still going.

Leaving in fifteen minutes to get prepped for the CT scan. Don't know how long it will take before someone actually lets me know...probably another $30 copay to my GI. LOL! It's not so much the $30 as it is the time away from work.

Wish me luck!

Judy

[Roda]

Hi Judy.. I was wondering how your CT scan went? Hope it went well.