My Parents Tested Negative

[cathzozo]

This is long, but please help...

I never had blood tests or stool tests and have been gluten-free since April. I originally went gluten-free to support my husband who we suspected might have a wheat allergy affecting his asthma. I babysit for an autistic boy so I had been following their Gluten-free Casein-free research for years, and I decided that if I was going to test wheat-free with my hubby, I might as well try gluten-free.

I immediately felt better. Chronic D became only intermittent. Less fatigue - measured by less afternoon naps. I often get home and think I need a nap out of habit, yet I don't actually fall asleep most days anymore. Previously, I slept for 60-90 minutes after getting home from work almost every day. My TSH level has been dropping into the low end of normal and my endocrinologist wants me to start dropping my synthroid dosage.

My parents were so impressed that they started to thinking about it and decided to get the full blood panel. Today they got their results back and both of them are negative. I was so sure my mom would be positive. Her family all has gastro issues and all of them (even her brother) are hypothyroid. I don't know the exact numbers, but my mom was a doctor herself and fully researched what tests they needed before hand.

Now I am totally doubting myself. Am I just imagining all of this. Or is it possible that this is some sort of wheat allergy and not a gluten problem? Should I do a gluten challenge? Should I get Enterolab testing? Or do I just go on with my current gluten-free diet and assume I am right? I was just set on the idea that my parents test were going to validate all of this work for me, but it hasn't seemed to work that way...

Thanks for any ideas/advice.

[eKatherine]

Do you need a doctor's permission not to eat something that is clearly making you sick? Of course not. Don't worry about anything but staying healthy.

[shayesmom]

My parents were so impressed that they started to thinking about it and decided to get the full blood panel. Today they got their results back and both of them are negative. I was so sure my mom would be positive. Her family all has gastro issues and all of them (even her brother) are hypothyroid. I don't know the exact numbers, but my mom was a doctor herself and fully researched what tests they needed before hand.

Now I am totally doubting myself. Am I just imagining all of this. Or is it possible that this is some sort of wheat allergy and not a gluten problem? Should I do a gluten challenge? Should I get Enterolab testing? Or do I just go on with my current gluten-free diet and assume I am right? I was just set on the idea that my parents test were going to validate all of this work for me, but it hasn't seemed to work that way...

Thanks for any ideas/advice.

My mother has been going in for Celiac panels and endoscopies for over 9 years now and has yet to be diagnosed. She has the full battery of tests run every 2-3 years and has a colonoscopy every 2. Yet when she remains gluten-free, she "miraculously" does much better and can actually leave the house without planning her day around the presence/absence of public restrooms. But she of course hangs on to her test results to justify her cheating....and then complains of hearburn, reflux and insomnia.

My dd and I are both completely gluten-free and are doing incredibly well. Dd was tested (with negative blood results) and I never was as I voluntarily put myself on the diet just to see. Celiac or not....the fact is, we are gluten-intolerant/sensitive/allergic.....whatever it is....gluten doesn't work for us. And if either of us has so much as a crumb of gluten....some major problems hit immediately.

Don't doubt yourself on this. You know better than anyone how you feel. If you need further "proof", look into Enterolab. At least that will get you some real answers unlike the methods my mom is currently using to determine hers. I'm thinking that by the time she hits 15 years of GI issues, reflux, heartburn, insomnia, weight loss.....the damage should have progressed enough to be detectable by traditional means. And then she can start the diet while treating for osteoporosis.

Oh! And FYI~ my mother's sister has been going into the doctor for GI problems and generalized ill health for 5 years now. When she first heard of what I was doing with Shaye in regards to the diet and all of the symptoms dd had shown....she said, "OMG! That is EXACTLY what I've been feeling". She was tested and has biopsy-proven Celiac Disease. You may find that your non-diagnosed observations and results will carry a long way in terms of helping other family members get to the bottom of their own health issues.

[Guest nini]

Celiac is only ONE of the many manifestations of gluten intolerance, when the Dr.s test for it they are ONLY looking for Celiac, so just because test results are "negative" it only means that they are "not positive for Celiac" at least according to the CURRENT diagnostic standards. No one needs permission from a Dr. to be on a gluten-free diet and positive dietary response like you've shown is more than sufficient evidence to stay gluten-free. My daughter's test results were also "negative" but mine were highly positive... go figure... my daughter still responded miraculously to the gluten-free diet and therefore is most definitely gluten intolerant. It doesn't matter what her "tests" say, her body tells her she can't have it and she is so much healthier without it. Admitedly it's harder to convince grown people to ignore the "tests" and to simply try the diet... "it couldn't be THAT simple!" uh yes it is... why make it more complicated than it has to be?

[cathzozo]

Thank you all for your responses. I am feeling much better this morning than I was last night when I first heard the results from my parents. I have a habit of doubting myself and that definitely was a problem last night. Once my husband got home, his response was the same as all of your responses. More importantly, I was convinced that this was a solution before my parents ever considered the testing. If I *knew* this then, why am I doubting it now?

Originally last night, I spoke with my dad. He was the one who told me that the tests were negative. Later when I talked to my mom, I found out that she still plans to try gluten-free for at least 6 weeks to see if it affects her TSH. So even she isn't putting full faith into the blood tests.

Sometimes mood is much better and logic is much simpler in the morning light rather than evening sleepiness...

I appreciate all of the support from this board. It seems like the medical world has been really learning a lot about this in the last few years, but they still seem to be missing many things. And maybe those missing links are the explanation for me and my family.

Shayesmom - It's great that you were able to help your aunt by showing how it has helped you and your daughter. That's cool! I'm considering going with Enterolab, but I think doing that is an act of further self-doubt, so I will try to avoid that (except maybe fore testing other sensitivities).

eKatherine - This is somewhat embarrasing, but the truth is I already have my doctor's permission to eat gluten-free. She said that if I felt better that we wouldn't worry about the bloodwork. And that's my real doc. My doctor mom is very supportive.

nini - I must remember simple. I can certainly complicate anything.

So, with reminders that I still need to work on self-doubt, I will sign off and get to work. Have a great day!

[jenvan]

cathzozo-

Yes, as has been said here, just b/c your parents don't have celiac disease, doesn't mean you can't. My parents both have other autoimmune conditions (my mom has Hashi's), but neither had positive bloodwork or biopsies...so don't let it throw you.

[spunky]

One reason I don't like doctors is that tthey are hung up on lab tests and other high-tech testing results, no matter what a person sees in his or her own life experience.

I agree with what so many others here have said, "You don't need a doctor's permission..."

There is no doubt in my mind that my health has vastly improved now, 8 months' gluten free, from where I was last January, when I really wondered if I was dying. I didn't consult a doctor, I just went gluten free to the extreme and hoped I would get better. I often wonder what a doctor would've told me if I'd gone back in January, and, while I know some people have been helped by doctors, from my own past experience with them, I'd be willing to bet I would still be sick and in the midst of all kinds of expensive, invasive lab work that would have them scratching their heads and calling me hypochondriac.

Trust yourself. If you are better, then you are obviously doing something right.

[ravenwoodglass]

Thank you all for your responses. I am feeling much better this morning than I was last night when I first heard the results from my parents. I have a habit of doubting myself and that definitely was a problem last night. Once my husband got home, his response was the same as all of your responses. More importantly, I was convinced that this was a solution before my parents ever considered the testing. If I *knew* this then, why am I doubting it now?

Originally last night, I spoke with my dad. He was the one who told me that the tests were negative. Later when I talked to my mom, I found out that she still plans to try gluten-free for at least 6 weeks to see if it affects her TSH. So even she isn't putting full faith into the blood tests.

Sometimes mood is much better and logic is much simpler in the morning light rather than evening sleepiness...

I appreciate all of the support from this board. It seems like the medical world has been really learning a lot about this in the last few years, but they still seem to be missing many things. And maybe those missing links are the explanation for me and my family.

Shayesmom - It's great that you were able to help your aunt by showing how it has helped you and your daughter. That's cool! I'm considering going with Enterolab, but I think doing that is an act of further self-doubt, so I will try to avoid that (except maybe fore testing other sensitivities).

eKatherine - This is somewhat embarrasing, but the truth is I already have my doctor's permission to eat gluten-free. She said that if I felt better that we wouldn't worry about the bloodwork. And that's my real doc. My doctor mom is very supportive.

nini - I must remember simple. I can certainly complicate anything.

So, with reminders that I still need to work on self-doubt, I will sign off and get to work. Have a great day!

I am glad to hear that if your Mom has problems she is going to try the diet anyway. I am the one who was always negative with blood tests in my family and it resulted in many misdiagnoses and years of pain. Everyone else showed up on the blood tests, even one family member who 'thought' he had no gluten issues, until they were gone. It is often helpful to get your hands on the actual test results also rather than just the doctors decision on them. At times a doctor will call a very low positive a negative or inconclusive result.

[Guest ~jules~]

Yep, autoimmune diseases run in my family also. I have a diabetic mother, and grandmother on that side. On my fathers side I have a grandmother who died of lymphoma when he was 6, she died 6 months after her mother died of the same thing. I don't suspect celiac symptomatically in any of my family, accept one. My oldest brother has DH (I don't even dare to try to spell it) he just dismisses it as skin problems! I really wish I knew more about food intollerances before celiac came to me. With all my illness, confusion, and researching on the net I never "clicked" on celiac or gave it a second read. It never even ran across my mind that I could be sick because of what I was eating.