Negative Blood Test---now What?

[Hadleygirl02]

My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal?

My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy.

I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased.

All blood tests normal. Stool tests normal.

She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc.

I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist.

I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased?

What is my next step?

[Luisa2552]

I'm still fairly new to all of this and of course not a doc., but have you tried her on the gluten-free diet? If she responds well to that then there's your answer. Blood tests can be negative and you can still have celiac disease or gluten intolerance. You say they are planning a small intestinal biopsy in a few weeks? If it were my dd and knowing what I have been through with doctors and tests, I would skip the antacid trial and skip right ahead to the biopsy. Then the next day I would put her on the gluten-free diet. I knew my biopsy would be positive before it came back just by how much better I felt off gluten, but dont' take her off gluten before the test. As far as the rash, I'm not as familiar with DH but what I've read it will go away on the gluten-free diet. You could push for a biopsy but again, if it goes away on the gluten-free diet, then there's your answer.

Hang in there. Get her gluten-free as soon as possible and I bet you will see a great improvement.

[Gemini]

My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal?

My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy.

I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased.

All blood tests normal. Stool tests normal.

She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc.

I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist.

I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased?

What is my next step?

Your daughter may be too young for enough damage to have occurred to trip the test. It took me 20 years and a lot of damage before it was figured out and that should never happen! To be honest, any one with these symptoms, especially the smelly, fatty stools, most likely have celiac disease.

I know many people, especially with small children, like to see an official diagnosis on a piece of paper but this being an autoimmune disease, it doesn't always work that way.

I would suggest the diet, most definitely. You could biopsy the rash to see if it is DH, but it sounds like it and you have to ask whether you want a child to have a biopsy. I don't think the test is bad at all but I have no experience with DH myself.

If you do a test trial with the diet, it has to be for at least a couple of months and you must make sure your daughter gets no gluten....at all. It's the only way you'll know for sure. I will add that my sister's grown daughter had many of these symptoms as a child. Stomach aches galore. She is now 21 and has many serious health problems because she is not doing what she should with her diet. She doesn't have a diagnosis and doesn't want one, even with a diagnosed aunt (me) and 2 other autoimmune diseases associated with celiac disease. I never thought my family would be so stupid!

Good luck!

[mamaloca2]

Your daughter may be too young for enough damage to have occurred to trip the test. It took me 20 years and a lot of damage before it was figured out and that should never happen! To be honest, any one with these symptoms, especially the smelly, fatty stools, most likely have celiac disease.

I know many people, especially with small children, like to see an official diagnosis on a piece of paper but this being an autoimmune disease, it doesn't always work that way.

I would suggest the diet, most definitely. You could biopsy the rash to see if it is DH, but it sounds like it and you have to ask whether you want a child to have a biopsy. I don't think the test is bad at all but I have no experience with DH myself.

If you do a test trial with the diet, it has to be for at least a couple of months and you must make sure your daughter gets no gluten....at all. It's the only way you'll know for sure. I will add that my sister's grown daughter had many of these symptoms as a child. Stomach aches galore. She is now 21 and has many serious health problems because she is not doing what she should with her diet. She doesn't have a diagnosis and doesn't want one, even with a diagnosed aunt (me) and 2 other autoimmune diseases associated with celiac disease. I never thought my family would be so stupid!

Good luck!

Your daughter sounds just like mine. She was neg for celiac. Have her tested through enterolab. Both my kids tested positive for gluten sensitivity and the diet has done wonders for them. Open Original Shared Link

[PaulaHayden]

Hi,

My son was tested for Celiac at 10 yrs. old and I was told that he did not have it....at 17 he tested positive!! He is now 21 with a son of his own who showed Celiac symptoms and tested negative. My son has irreversible damage and my 2 yr. old grandson is gluten free...if it quacks like a duck and looks like a duck...take her off the gluten. You have nothing to lose and your daughters healthy future to gain!

Paula

[glutenfreegirls]

Hi,

A skin biopsy is much less invasive (and isn't really a big deal), and if it is positive, you have the answer. Unfortunately, if it's negative you still don't know.

I would do the enterolab test in addition (or instead). Our dd2 was negative on blood test, and had improvement on a gluten-free diet. It wasn't until we did enterolab and removed her other allergens (dairy and soy) that she became truly well. We are now waiting on enterolab results for dd1, whom I just started gluten-free a few weeks ago.

I also agree with the duck analogy... you don't want to blow a diagnosis by going gluten-free before you have done the tests you want to do, but you also don't want to jeopardize her health by never trying the diet just because the tests are negative.

I empathize with the frustration of not knowing what's wrong and the helpless feeling when our kids are sick. Your daughter's symptoms (except the rash) sounds a lot like our dd2.

Good luck!

Nancy