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twflash

Conundrum With Testing And No Insurance...

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I have been suffering from symptoms for at least the past 14 years and probably longer. I knew I felt better on a "wheat free" diet, but didn't make the gluten connection until recently and by accident. Here's my problem:

Family history: Grandmother died of Rheumatoid Arthritis

Father has RA

Paternal Aunt has lupus

All three have an enlarged thyroid

Mother has "missing" enamel on front teeth (since a child) and has had chronic IBS since little. Probably lactose intolerant. Started suffering from migraines a few years back.

Maternal Aunt has suffered from excema (chronic) since infant and had thyroid removed due to benign tumors.

Sister has PCOS and thyroid disease

I was diagnosed with an enlarged thyroid at age 9, believed to have mononucliosis (tests were negative) at age 10-12 due to "chronic fatigue" (never heard of back then), fibromyalgia in 1995 (after birth of child and car accident). Had gallbladder removed in '96 due to gallstones and chronic GERD/Esophagitis. IBS began shortly thereafter and has been on and off since. Diagnosed as pregnancy induced thyroiditis after birth of twins (tests are always so close to normal but I have goiters that grow and shrink (back and forth) after childbirth). Lost weight during both pregnancies only to gain 30-40 pounds literally overnight 3-4 months after delivery. Dr's could not properly diagnose Hashimoto's (no insurance)but said it was likely - classic symptoms and history of autoimmune. Diagnosed as fructose intolerant by a gastro that NEVER once suggested I be tested for celiac. Even while scheduling me for an endoscopy.

I did not respond well to thyroid medicine - lowest dose sent me into hyperthyroid almost immediately. I have ALL symptoms of hypo but seem to keep it managed. I have recently been in an all out autoimmune response since coming back from an extensive vacation. Knuckles are painful and swollen (did I mention I have the beginning of distended joints and curved fingers?), carpal tunnel is back (usually a sign that my thyroid is wacked) and IBS like no one's business. I had been on a strict low carb diet before and during the trip and came back exhausted and have been eating out alot.

I am very certain there is a gluten issue there somewhere, even though many of symptoms overlap with thyroid issues. But with the family history it seems like a no brainer. My main question is (took a while to get there, huh?) can I afford the testing? I think at the very least my daughter is gluten intolerant (constant stomachaches, lactose intolerant as an infant, canker sores, very sensitive, pale stools, etc). I don't want to traumatize her with the diet if she's not, especially with a twin brother that doesn't have the same symptoms. I keep going back and forth on whether I need a diagnosis or not as well. But financially we can't swing paying cash and I can't afford to get a diagnosis that can prevent getting insured in the future. I feel like it's a no win situation.

Can anyone help give me an approx. idea of how much these tests cost? I've gone thru an endoscopy but do I really want my 7 year old to??? Everything I read says get tested first and get a diagnosis before going on the diet but it's just not that simple for me. This diet will affect the whole family and the budget. But I know our health is worth it. I guess I just want to make sure it's necessary.

Help???

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I have been suffering from symptoms for at least the past 14 years and probably longer. I knew I felt better on a "wheat free" diet, but didn't make the gluten connection until recently and by accident. Here's my problem:

Family history: Grandmother died of Rheumatoid Arthritis

Father has RA

Paternal Aunt has lupus

All three have an enlarged thyroid

Mother has "missing" enamel on front teeth (since a child) and has had chronic IBS since little. Probably lactose intolerant. Started suffering from migraines a few years back.

Maternal Aunt has suffered from excema (chronic) since infant and had thyroid removed due to benign tumors.

Sister has PCOS and thyroid disease

I was diagnosed with an enlarged thyroid at age 9, believed to have mononucliosis (tests were negative) at age 10-12 due to "chronic fatigue" (never heard of back then), fibromyalgia in 1995 (after birth of child and car accident). Had gallbladder removed in '96 due to gallstones and chronic GERD/Esophagitis. IBS began shortly thereafter and has been on and off since. Diagnosed as pregnancy induced thyroiditis after birth of twins (tests are always so close to normal but I have goiters that grow and shrink (back and forth) after childbirth). Lost weight during both pregnancies only to gain 30-40 pounds literally overnight 3-4 months after delivery. Dr's could not properly diagnose Hashimoto's (no insurance)but said it was likely - classic symptoms and history of autoimmune. Diagnosed as fructose intolerant by a gastro that NEVER once suggested I be tested for celiac. Even while scheduling me for an endoscopy.

I did not respond well to thyroid medicine - lowest dose sent me into hyperthyroid almost immediately. I have ALL symptoms of hypo but seem to keep it managed. I have recently been in an all out autoimmune response since coming back from an extensive vacation. Knuckles are painful and swollen (did I mention I have the beginning of distended joints and curved fingers?), carpal tunnel is back (usually a sign that my thyroid is wacked) and IBS like no one's business. I had been on a strict low carb diet before and during the trip and came back exhausted and have been eating out alot.

I am very certain there is a gluten issue there somewhere, even though many of symptoms overlap with thyroid issues. But with the family history it seems like a no brainer. My main question is (took a while to get there, huh?) can I afford the testing? I think at the very least my daughter is gluten intolerant (constant stomachaches, lactose intolerant as an infant, canker sores, very sensitive, pale stools, etc). I don't want to traumatize her with the diet if she's not, especially with a twin brother that doesn't have the same symptoms. I keep going back and forth on whether I need a diagnosis or not as well. But financially we can't swing paying cash and I can't afford to get a diagnosis that can prevent getting insured in the future. I feel like it's a no win situation.

Can anyone help give me an approx. idea of how much these tests cost? I've gone thru an endoscopy but do I really want my 7 year old to??? Everything I read says get tested first and get a diagnosis before going on the diet but it's just not that simple for me. This diet will affect the whole family and the budget. But I know our health is worth it. I guess I just want to make sure it's necessary.

Help???

If you're not concerned with having a specific Celiac diagnosis, you can try testing through Enterolab:

www.enterolab.com

They test for gluten sensitivity through antibodies found in a stool sample, and you can get the gene testing as well to see if you have the genes that predispose to Celiac/gluten intolerance. This would also be of use to you to see if it runs in your family or not, and you can figure out if maybe those problems your family were having were gluten related. I think this package was $369. (I don't know if thats cheaper than a scope or not for you) The best part is you don't have to be eating gluten to do the testing.

This testing does not test for Celiac but it will show up if you are sensitive to gluten. It doesn't really matter though because the treatment is the same : A gluten free diet.

If you really want to just know if gluten is the problem then this is a good alternative to you. I get my results in on Tuesday.

Hope this helps and good luck :)

Kim


~Kim~ Gluten-Free since July 2008

9 inguinal hernia surgeries in 3 years (2004-2007)

Symptoms Pre-Dx: constant abdominal cramps, acid reflux, nausea, vitamin B12 deficiency, chronic constipation, fatigue, hyperhidrosis, migraines

July 7/08 - tTG 1 (+>4) - Diagnosed with IBS, given Rx, sent home to "relax"

Gastro refused biopsy as I had "already been though enough"

Enterolab Results (Aug 2008) - Fecal Antigliadin IgA 11 (Normal Range <10 Units)

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Sept/09 - New GP gave Celiac Dx based on response to diet and family history

National Celiac Disease Conference 2010 Volunteer

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Thanks, Kim. I'll look into it. I'm also going to talk with my kid's pediatrician. I don't need an official diagnosis but I think it would help with the kids and sticking with the diet. But I'm not going to drive us all crazy with dr chasing. It is what it is. I know the connections aren't just coincidence and I want to save my kids from the same aches and pains I've suffered from.

Thanks for the advice.

D.S.

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Hey, I have a set of boy girl twins too!!

I don't know how old your kids are, so this may not work for them.

My DD is on a trial gluten free diet now. It is trial because the one blood test run was negative(the dr did not make sure that all three blood tests were being run even though I said I wanted them to be:( )

I did enterolab test with her that showed borderline gluten reaction, but without celiac genes present. The nurse said because her total IGA levels (checked by blood test) were almost deficient that she could not produce enough antibodies to test positive.

so we are doing a trial diet and will reintroduce gluten. My DD stopped growing, has horrible mood swings, and gets 3 kinds of mouth sores(including canker sores).

since going gluten free she has grown and she has only gotten 2 sores(one the day after accidentally eating gluten). Sadly she still can be moody. She is seven.

one thing is we are selfemployed, I have insurance and the kids do. I have definately experienced how hard it is to get insurance. I am reluctant to have anything permenant on their record I do not have to.

good luck.


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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Hey, I have a set of boy girl twins too!!

I don't know how old your kids are, so this may not work for them.

My DD is on a trial gluten free diet now. It is trial because the one blood test run was negative(the dr did not make sure that all three blood tests were being run even though I said I wanted them to be:( )

I did enterolab test with her that showed borderline gluten reaction, but without celiac genes present. The nurse said because her total IGA levels (checked by blood test) were almost deficient that she could not produce enough antibodies to test positive.

so we are doing a trial diet and will reintroduce gluten. My DD stopped growing, has horrible mood swings, and gets 3 kinds of mouth sores(including canker sores).

since going gluten free she has grown and she has only gotten 2 sores(one the day after accidentally eating gluten). Sadly she still can be moody. She is seven.

one thing is we are selfemployed, I have insurance and the kids do. I have definately experienced how hard it is to get insurance. I am reluctant to have anything permenant on their record I do not have to.

good luck.

Sounds like we are definitely in the same boat! My twins are the same age as yours and my husband is also self employed. Did your insurance reimburse you for the enterolab tests? I'm working on getting at least the kids covered by insurance for now and then getting at least the one kid tested. We've officially taken her off dairy as of today. So far no belly aches. She's not really moody persay....just has "wild" times. She's been that way since she was born, but she was also lactose intolerant then as well. Thought she had outgrown it...oh well. Back to the drawing board! I'll keep you posted!

Do you have your entire family on the diet? I think that's the only way we're going to be able to do it. I'm afraid they'll grab bread out of "habit" if it's in the house.

Thanks again for the info!

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