Any Thoughts On What I Should Expect?

[chrissyinnj]

I took my son for gluten sensitivity blood work.

His doctor called back on her cell, and it was broken up, but it sounded like she said

Everything else looked normal, but his ttg was 55. She wants him to see a gi doctor. I can't get back in touch with her for a week, she is on her way out of town. I have to go pick up the lab results to take with me.

Any thoughts what this might mean? What should I expect at the gi guy?

My son has no gi symptoms btw, except two years ago he had a perforated stomach ulcer. He has no d,gas, cramps, etc. All his symptoms have nothing to do with the gut.

(His enterolab report came back a 9 for gluten. 10 and up is positive.)

[beachbirdie]

I took my son for gluten sensitivity blood work.

His doctor called back on her cell, and it was broken up, but it sounded like she said

Everything else looked normal, but his ttg was 55. She wants him to see a gi doctor. I can't get back in touch with her for a week, she is on her way out of town. I have to go pick up the lab results to take with me.

Any thoughts what this might mean? What should I expect at the gi guy?

My son has no gi symptoms btw, except two years ago he had a perforated stomach ulcer. He has no d,gas, cramps, etc. All his symptoms have nothing to do with the gut.

(His enterolab report came back a 9 for gluten. 10 and up is positive.)

I don't really have an answer for your question, just another question. What are your son's symptoms? Not all celiac symptoms are digestive, that's the reason I ask.

A positive TTG is a sign for more testing needed. A poster in another thread posted an Open Original Shared Link from the Mayo Clinic, showing what the response should be to differing test results. You might take a peek!

Best,

beachbirdie

[chrissyinnj]

Yes, I discovered through reading that it could affect any part of your body. However, I hesitated to take him to a gi doctor without gi symptoms.

Currently he struggles with the following: ADD, not being able to concentrate, trouble sleeping, chronic stuffed nose, throat clearing, discharge from eyes. We have tried a variety of shampoos including prescription for seb derm for the last 4 years with no improvement. (It cleared up completely on a 6 week gluten-free trial) He has severe acne and allergies.

in the past he has struggled in asthma, eczema, stomach ulcer, and nosebleeds.

[beachbirdie]

Yes, I discovered through reading that it could affect any part of your body. However, I hesitated to take him to a gi doctor without gi symptoms.

Currently he struggles with the following: ADD, not being able to concentrate, trouble sleeping, chronic stuffed nose, throat clearing, discharge from eyes. We have tried a variety of shampoos including prescription for seb derm for the last 4 years with no improvement. (It cleared up completely on a 6 week gluten-free trial) He has severe acne and allergies.

in the past he has struggled in asthma, eczema, stomach ulcer, and nosebleeds.

I see! How old is your son?

The next doctor will probably do more testing. Maybe more complete blood testing, possibly including the genetic test, and maybe recommend the biopsy.

You do have a somewhat clear answer just in the observation that a gluten-free diet sent those symptoms packing! Regardless of what the tests turn up, if it were me, I'd go with the gluten-free diet no matter what. Wish I could go back in time and do that for my son.

When my son was very young, he had a terrible time with eczema, also had a lot of nosebleeds. His pediatrician said he was sensitive to water and recommended a waterless skin cleaner for him! Arrgghh. And gave us cortisone cream to slather on his skin.

If I'd known back when he was little what I know now, we'd have been a gluten free family. I am sure his spine problems are a result of malabsorption of nutrients, apparently his kyphosis could be a result of Vitamin D deficiency. Our ignorance has sentenced him to a lifetime of pain.

My son is 30 now, and throughout his teen years and his twenties he had a red, blistery rash all over his hands that looked like poison oak. I didn't have a clue, other than I had the same thing though not as severe. Last year, when my daughter found out that bread and pasta gave her a lot of stomach trouble, everyone decided to try eating gluten free. My son has clear skin for the first time in his life! And no migraines, no nosebleeds. He is never going back on gluten foods. He ate some a couple of weeks ago because his wife had some stuff in the house she couldn't eat because of a medical problem, he didn't want to let it go to waste. He got so sick!

Wishing you the best for your son!

Regardless,

[Skylark]

A positive TTG is a sign for more testing needed. A poster in another thread posted an Open Original Shared Link from the Mayo Clinic, showing what the response should be to differing test results. You might take a peek!

That testing matrix is depressing. It is horribly conservative -- the kind of thing that has doctors telling people with anemia, low vitamin D, chronic diarrhea, axiety, and ridged fingernails that they are perfectly fine and have anxiety-caused IBS.

Your son will probably have an endoscopy and biopsy. No matter what the doctor says, once testing is done try him on the gluten-free diet and request repeat TTG testing in a year. If he's got gluten-caused autoimmunity that is causing his health problems he will feel better and the TTG will go down to normal.

[chrissyinnj]

I don't think it's a coincidence that his scalp cleared up that quickly, after years of trying different shampoos. The dermatologist even gave him a prescription for a 4oz bottle of shampoo that cost $100. Can you imagine? In all, the doctors have prescribed 6 different meds to take. I'm not giving him all that, especially now that it looks like much of it can be resolved with diet. I am looking into other foods as well, such as dairy.

We only did a 6 week elimination, which is not the several months that was recommended. We will have to do a longer trial. I thought we did pretty well, except yesterday at church as I was passing out the Altoids, I thought -oh no, did you check those ingredients? Sure enough, wheat is listed. So I've been dosing him every Sunday, lol. They are pretty small though, so I'm not sure how much it messed up our trial. We saw some results anyway.

I was wondering with the matrix where gluten sensitivity might fit in?

[Skylark]

I was wondering with the matrix where gluten sensitivity might fit in?

In that kind of matrix, it doesn't. Gluten sensitivity is only vaguely recognized by the mainstream medical establishment and the only definitive test is by diet elimination and challenge.

[sa1937]

Here's an article in the most recent issue of Living Without magazine featuring an interview with Dr. Fasano on gluten sensitivity. Open Original Shared Link

[ravenwoodglass]

That testing matrix is depressing. It is horribly conservative -- the kind of thing that has doctors telling people with anemia, low vitamin D, chronic diarrhea, axiety, and ridged fingernails that they are perfectly fine and have anxiety-caused IBS.

Your son will probably have an endoscopy and biopsy. No matter what the doctor says, once testing is done try him on the gluten-free diet and request repeat TTG testing in a year. If he's got gluten-caused autoimmunity that is causing his health problems he will feel better and the TTG will go down to normal.

I have to agree with Skylark. After reading that matrix I had to just kind of shake my head. My doctors thinking along the lines of that formula almost killed me. I don't show up in blood work and I have one of the odd ball celiac genes that are not taken into consideration.

OP as soon as you are done with all testing you choose to have done then do the diet strictly. If it helps you have your answer. It is possible that a positive biopsy may still happen even without obvious GI symptoms but it is also very possible that test will be negative if the most impacted systems are skin and brain.

[ChristiL]

That testing matrix is depressing. It is horribly conservative -- the kind of thing that has doctors telling people with anemia, low vitamin D, chronic diarrhea, axiety, and ridged fingernails that they are perfectly fine and have anxiety-caused IBS.

Wait, wait, wait....I have ridged fingernails. They are very strong, but have ridges that run lengthwise. I always thought it was due to the native american in me or possible Raynaud's Syndrome. Is this somehow related to Celiacs????

[ravenwoodglass]

Wait, wait, wait....I have ridged fingernails. They are very strong, but have ridges that run lengthwise. I always thought it was due to the native american in me or possible Raynaud's Syndrome. Is this somehow related to Celiacs????

The ridges can be due to nutritional deficiencies. In some folks they will go away once they are absorbing nutrients again. In my case they haven't even after almost ten years gluten-free. My grandmother may have been Native American, no way to know for sure just going off what my Dad always said. I am curious as to why you say it may be because of Native American heritage. Can you enlighten me?

[ChristiL]

Well, I have just always been told that. My dad has ridged nails like I do and I've just always been told that it's the native american in us. I did search it one time (before Google LOL) and found a couple references to it (along with the shovel teeth, lack of Carrabelli cusp, high cheek bones, inverted breast bone, etc.). I don't remember what the website was. Now, I'll have to go see if I can find it. LOL **My ridges go up and down the nail, not straight across and they're not deep, but are noticeable without nail polish on them.

[beachbirdie]

I have to agree with Skylark. After reading that matrix I had to just kind of shake my head. My doctors thinking along the lines of that formula almost killed me.

The more I've been thinking about this, the more I realize just how true it is that "formula-based" thinking leaves a lot of people very sick. There is a similar matrix for the diagnosis of thyroid disease, and I didn't fit into it at all. I was awfully darned sick and facing a lifetime of several terrible medications before I met the doc who helped me.

Doctors just don't seem to think any more. It's almost as if we'd get just as effective help by calling a med-help call center in India. Doctors today just go down a checklist, and run through a script, trying to jam every patient onto the "90% probability" category. They ask themselves "What do 90% of people have?" and that's what they diagnose. It's no wonder people are forced to spend so much time and money to get well...every time you go back and report "well,THAT didn't work..." they just move down to the next thing on their list.

Ack.

The docs and nurses on one of my favorite medical blogs make fun of Dr. McInternet, but for some of us, it's the only way we got real help.

[Skylark]

Wait, wait, wait....I have ridged fingernails. They are very strong, but have ridges that run lengthwise. I always thought it was due to the native american in me or possible Raynaud's Syndrome. Is this somehow related to Celiacs????

I had vertical ridges in my nails, lots of white spots, and my nails tended to peel and break before I went off gluten. Now my nails are strong and I think they are prettier. The vertical nail ridges can be normal and they are certainly not cause for alarm like horizontal ridges; however, they can also be a sign of a mild nutrient deficiency that might be from malabsorption.