Help Me Decode Tests!

[1974girl]

I have a question... I have an 11 year old daughter who has been diagnosed with celiacs this past week. We are skeptical of the decision and even the pediatrian has asked that I get a second opinion. What would you do?

She has zero symtoms. I mean none. She only had the blood work done because she has Hashimotos thyroiditis and sometimes they go together. Random blood test every few years. Her blood work was positive but biospies only showed "simplification" of the villi. Have you ever heard of that? I have asked 2 GI nurses and the pediatrican and they didn't know. The GI doc said it meant shorter and thinner. He only took 2 biopsies after we specifically told him to take multiple. One biopsy was normal. One showed "simplification". So he told me that "in his opinion" she had it although it is not a typical case he sees. She has Ttg AGA of 7 (weak positive-should be under 3) but I know that in cases of Diabetis and Hashimotos, these can show false positives. She does have both genes for it but apparently I might have those myself. DH has been tested since he is type 1 diabetic and is negative in blood tests.

Now...here is my question. While doing the EDG, they found she had grade 3 out of 4 for EE (Esophagus issue) It is where her food could start getting stuck and might need it stretched if that happens. Again, no symtoms at all. It is caused by a Food Allergy usually. So we had testing. Her skin test showed positive for tree nuts, pork, oats, rice, all beans, all peas, apples, and mustard. So wow.....not just gluten free but a lot free! We now wonder if the "simplification" could be from a food allergy or if the blood test could be positive becuase she is so allergic to food. It is hard to believe she has no symtoms but she doesn't. Her symtoms are apparently all on the INSIDE of her body.

So is "simplification" something you guys have heard? We have a second opinon coming but it is in a month. She will have to be rescoped in 3 months for her EE so I might have them take more celiac samples.

Here are more results

Ttg (IGA) 7 should be 3 or less

TTG (IGG) neg

Reticulin (IgA) negative

Endomysial (IGA) postive but doesn't have a range

Gliadin Antibody IGG 60 should be under11

Gliadin Ab IGA normal range

[ravenwoodglass]

I'm sorry but with those blood test results there is really no doubt she has celiac even if the biopsy was negative, which it wasn't. EE is also often seen in us. Thankfully it was caught and you have a great doctor to look for it. She may not seem to be having GI issues but celiac can attack other organs not just the gut. The thyroid and brain, can lead to infertility and multiple miscarriages and can cause mood and learning problems just to name a few.

Do make sure you test everyone in the family periodically and if someone does have any symptoms do give the diet a try even if tests are negative. Read as much as you can here and ask any questions you need to as she really does need to be on the diet.

[AJ Leigh]

Because she is so young chances are her system hasn't grown weak enough to show symptoms internally. I was about age 11 (after I started my period) that I started having signs of celiac, but they appeared slowly. I was about 20 when the symptoms got too bad to ignore. First I was diagnosed with lactose intolerance. Then IBS. Then allergies. Then fibromyalgia and sleep apnea Then this then that. It wasn't until now, when I'm almost 23, that doctors found out what was wrong.

If it would make you feel better to have a second opinion, definitely get one! It's her health, so it's always better to be safe than sorry. However, as someone already mentioned, a positive blood panel is pretty much 100% accurate. Even people like me, who are sure they have it, don't always show positive on a blood test.

Though your daughter may not be having stomach complications yet, chances are as her stomach gets weaker and weaker over time she'll begin having intestinal and digestive issues if left to eat gluten.

I'm sorry she has to go through this, but on the bright side there are lots of gluten free options and allergy friendly options out there. Thankfully as time goes by people are becoming more educated. Best of luck <3

[pain*in*my*gut]

I have a question... I have an 11 year old daughter who has been diagnosed with celiacs this past week. We are skeptical of the decision and even the pediatrian has asked that I get a second opinion. What would you do?

She has zero symtoms. I mean none. She only had the blood work done because she has Hashimotos thyroiditis and sometimes they go together. Random blood test every few years. Her blood work was positive but biospies only showed "simplification" of the villi. Have you ever heard of that? I have asked 2 GI nurses and the pediatrican and they didn't know. The GI doc said it meant shorter and thinner. He only took 2 biopsies after we specifically told him to take multiple. One biopsy was normal. One showed "simplification". So he told me that "in his opinion" she had it although it is not a typical case he sees. She has Ttg AGA of 7 (weak positive-should be under 3) but I know that in cases of Diabetis and Hashimotos, these can show false positives. She does have both genes for it but apparently I might have those myself. DH has been tested since he is type 1 diabetic and is negative in blood tests.

Now...here is my question. While doing the EDG, they found she had grade 3 out of 4 for EE (Esophagus issue) It is where her food could start getting stuck and might need it stretched if that happens. Again, no symtoms at all. It is caused by a Food Allergy usually. So we had testing. Her skin test showed positive for tree nuts, pork, oats, rice, all beans, all peas, apples, and mustard. So wow.....not just gluten free but a lot free! We now wonder if the "simplification" could be from a food allergy or if the blood test could be positive becuase she is so allergic to food. It is hard to believe she has no symtoms but she doesn't. Her symtoms are apparently all on the INSIDE of her body.

So is "simplification" something you guys have heard? We have a second opinon coming but it is in a month. She will have to be rescoped in 3 months for her EE so I might have them take more celiac samples.

Here are more results

Ttg (IGA) 7 should be 3 or less

TTG (IGG) neg

Reticulin (IgA) negative

Endomysial (IGA) postive but doesn't have a range

Gliadin Antibody IGG 60 should be under11

Gliadin Ab IGA normal range

Those blood tests results are screaming positive for Celiac! If she is positive for the endomysial anitgen, that's pretty much 100% specific for Celiac disease.

"Simplification" is another way of saying blunted (simplify: To reduce in complexity or extent). If villi are simplified, they are reduced in size, i.e blunted.

Sorry if I sound harsh, but there is no way I would question your daughter's dx. She has Celiac by every definition in the book (positive blood tests, positive biopsy, positive genetics). She should be gluten free immediately and forget about the second opinion. Celiac dx doesn't get any easier than this, unfortunately.

[Roda]

Those blood tests results are screaming positive for Celiac! If she is positive for the endomysial anitgen, that's pretty much 100% specific for Celiac disease.

"Simplification" is another way of saying blunted (simplify: To reduce in complexity or extent). If villi are simplified, they are reduced in size, i.e blunted.

Sorry if I sound harsh, but there is no way I would question your daughter's dx. She has Celiac by every definition in the book (positive blood tests, positive biopsy, positive genetics). She should be gluten free immediately and forget about the second opinion. Celiac dx doesn't get any easier than this, unfortunately.

I agree with this. You have a pretty cut and dry celiac diagnosis.

Just to give you something ponder over..

My youngest son had horrible issues from birth. We seen an allergist/immunologist for a long time and he did work wonders for him and by 3.5 years old he was pretty normal and off all the boat loads of meds he was taking. A couple of months before he turned 4 I was diagnosed with celiac. He was not showing any symptoms but I had him screened anyway. He was negative. Fast forward 2 years(age 5.5) and my youngest son had a positive IgA tTG test only. He had been having random symptoms for at least 6 months. I decided to put him gluten free without a scope/biopsy, since I had celiac too. We later regretted not getting it so after 4.5 month gluten free we decided to do a gluten challenge. It did not go well and he reacted very badly so we had to call it off after three days. He is diagnosed based on his symptoms, postitive IgA tTG, positive response to the gluten free diet, bad response to gluten reintroduction and my celiac diagnosis. In hindsite I believe he had a gluten problem since he was an infant. It was because of his intolerences as a baby that I eventually found out I had celiac. I had inadvertently went gluten light for the first 11 months of the 16 months I breastfed him. Some of his issues didn't get better, but I was feeding him barley cereal! No wonder, but we didn't know about gluten/celiac then. He is now 7 and been gluten free for a little over a year and doing fantastic! He has grown over 4" this past year and is still goig strong. I think he is making up for not growing much before.

My oldest son(now almost 11) had his fair share of issues as a baby and toddler. He was screened after my diagnosis and was negative also. There was always something nagging me so I have had him blood tested every year and probable a total of 4 times now and he is always negative. I had people on this board encouraging me to try the diet with him anyways to see if it helped. For two years I toyed with the notion but couldn't bring myself to commit to it with negative results. I really started to consider it more seriously last spring after seeing such resounding positive results with his younger brother. Little brother was growing so much and really wasn't that behind his brother. Being 4 years apart I would figure there would have been a greater difference in their size. He was also one of the smallest kids in the 4th grade. His growth pretty much stalled out. He was also complaing of daily stomach aches/bloating/gas pains, nausea and reflux. Over the summer I consulted with a GI and she agreed even in lieu of the negative bloodwork to scope him base on his symptoms and family history. His scope/biopsies were completely normal also. A week after his scope I decided once and for all I was at least going to do a 3 month gluten free trial. My only regret is not trying it sooner! It has been 4 months and he has gained 6+ lbs., is slowly...starting to grow, no more stomach aches/gas/bloating, no nausea/reflux, and for the first time in his life his bowel movements are regular. His color has improved also. We did breifly reintroduce gluten right after Christmas. I was expecting a horrible reaction but that never came. He did have some mild symptoms in the form of moodiness, stomach aches and headache. It was enough for him to decide he wanted to continue eating gluten free along with the improvements in his growth he has seen! Thats a pretty big decision for a kid who isn't even 11 yet!

If you need that second opinon, by all means get it to ease your mind. After she goes gluten free you may start to realize that she did have symptoms. They don't always take the form of GI symptoms. For example one of my youngest son's symptoms was OCD like behavior focused on his shoes. That has totally gone away, but does resurface when he gets glutened. I wish your daughter and your family much luck and good heath on this new journey.

[Skylark]

She is celiac. Endomysial antibodies are EXTREMELY specific for celiac disease, and the "simplification" of the villi is the beginning of the autoimmune damage. Antibodies often precede severe villous atrophy and it's a blessing for your daughter that it was caught early, before there was a lot of damage. She won't have her growth stunted. The positive TTG shores up the diagnosis, as does the anti-gliadin IgG.

You say that she doesn't have symptoms, but what do you call the Hashimoto's at such a young age? Thyroid disease is strongly associated with celiac and gluten intolerance. Get her off the gluten and her thyroid function may improve.

You can be absolutely certain of celiac by retesting for antibodies after six months gluten-free. They should be either falling or more likely they will be gone.

[1974girl]

She is celiac. Endomysial antibodies are EXTREMELY specific for celiac disease, and the "simplification" of the villi is the beginning of the autoimmune damage. Antibodies often precede severe villous atrophy and it's a blessing for your daughter that it was caught early, before there was a lot of damage. She won't have her growth stunted. The positive TTG shores up the diagnosis, as does the anti-gliadin IgG.

You say that she doesn't have symptoms, but what do you call the Hashimoto's at such a young age? Thyroid disease is strongly associated with celiac and gluten intolerance. Get her off the gluten and her thyroid function may improve.

You can be absolutely certain of celiac by retesting for antibodies after six months gluten-free. They should be either falling or more likely they will be gone.

I said she didn't have symtoms because 4 years ago when they found her thyroid problem, the endo doctor tested her for celiacs. She was negative in her blood. But I knew they went together so I had her retested last month. I am just in denial I guess. I told my husband what you guys have said and we might cancel the 2nd opinion. OR...we might keep it for my 8 year old. She has the Ttg and slightly elevated Igg. But the same doctor told me she did not have it because she doesn't have the Reticulin IGA or the Endomysial (IGA). He said he felt sure she'd develop it later in life but she might could "make it to 20". He wants to do bloodwork every 6 months for her.

[Skylark]

Oh, gosh. If these were my kids I would take BOTH off gluten and never look back! This doctor is an idiot. (We find a lot of those around here.)

If you wait for the kids' celiac to become severe, you risk stunting their growth and you risk the 8-year old also getting thyroid problems. First, developing celiac disease is a process and the single TTG autoimmune antibody means she's probably far enough along to already have the autoimmunity. Second, about 25% of people with celiac never develop anti-EMA even if the villous damage is severe. Anti-EMA a very specific test but the sensitivity is lacking. It is hard to get a positive result on even one celiac blood test in children so you must not disregard the anti-TTG and gliadin IgG.

Your doctor wants to have you keep feeding your daughter gluten until there are so many antibodies that he can make his "diagnosis" while your daughter's health suffers. This is poor medicine. If she were my daughter I would either insist on a scope for the 8-year old immediately, or take her off gluten with her sister and see if the TTG and anti-gliadin antibodies fall.

I hope this makes sense and please feel free to ask for help with the diet!

[ravenwoodglass]

Oh, gosh. If these were my kids I would take BOTH off gluten and never look back! This doctor is an idiot. (We find a lot of those around here.)

If you wait for the kids' celiac to become severe, you risk stunting their growth and you risk the 8-year old also getting thyroid problems. First, developing celiac disease is a process and the single TTG autoimmune antibody means she's probably far enough along to already have the autoimmunity. Second, about 25% of people with celiac never develop anti-EMA even if the villous damage is severe. Anti-EMA a very specific test but the sensitivity is lacking. It is hard to get a positive result on even one celiac blood test in children so you must not disregard the anti-TTG and gliadin IgG.

Your doctor wants to have you keep feeding your daughter gluten until there are so many antibodies that he can make his "diagnosis" while your daughter's health suffers. This is poor medicine. If she were my daughter I would either insist on a scope for the 8-year old immediately, or take her off gluten with her sister and see if the TTG and anti-gliadin antibodies fall.

I hope this makes sense and please feel free to ask for help with the diet!

Skylark has said this so well I don't have anything to add except I hope you heed her advice. Celiac is the only disease I know of where doctors want us as severely impacted as possible before they will diagnose.

[Roda]

I agree with the previous two posters. Go gluten free with both kids. I delayed gluten free with my oldest because of negative blood testing for two years. He is doing so well and I'm glad I did get him on it. And again my youngest son only had a positive IgA tTG, nothing else, but is celiac none the less. You and Dad should get screened too since your risk went from 1 in 133 to 1 in 22 with a first degree relative diagnosed.

[nora-n]

the endomysium antibody test is extremely specific for celiac, and not influenced by diabetes.

I would keep both off gluten with those genes and test results.

They know of at least 9 genes for celiac, and therefore siblings and close family members have a very high risk for celiac.