Advice Please

[Guest guest]

I posted recently that my Prometheus Celiac Gene test just came back

negative. One year earlier I had a negative blood test but a

questionable biopsy that showed an elevated T cell count but no villi

damage so I was put on a GF diet based on the biopsy. I just had my

one year follow up biopsy that showed T cells returned to a normal

range...basically a healthy small intestine. So here is my frustration:

Based on the negative gene test my Dr was initially saying I could go

off the diet since I do not have celiac disease. I did not go off the

diet at the time since I had been on it a yeear and did not want to

throw off the biopsy. Now that the biopsy is back he says he is very

pleased with the results and attributes the improvement to the GF diet

and says to stay on the diet even though the gene test is negative.

My symptoms had mainly been bloating after eating and constipation and

I was having some bleeding and acute reflux at the time I sought

treatment. The gastro I went to was coincidentally a celiac

specialist. I realize a golden rule in treating Gluten intolerance is

" how to you feel on the GF diet " ... but after a year of adhering to

the gluten free diet I have seen some moderate improvement of GI

symptoms but I also have had new symptoms that came on after I went on

the GF diet like hair loss, weakness and fatigue associated with

orthostatic hypotension.

Basically I am very confused. I feel like this diet is such a dramatic

lifestyle change for something that I feel is not 100% certain. It

would be one thing if I felt great...the dr. says give the GF diet

more time and maybe the other symptoms may improve. I do not think I

am being " glutened " from a secret source or the biopsy would not be so

clean. We've run tons of other blood tests for other autoimmune stuff,

all normal... Advice? Input? thanks for listening.

[Guest guest]

I for one believe that there are plenty of good reasons to be GF

even in the absense of certifiable CD. Based on the improvements in

the biopsy, it would seem that gluten was indeed causing damage and

that healed being GF. I personally find that pretty compelling,

even if it is not CD. Remember, there is a lot about gluten

intolerance that they don't yet understand.

As far as your other issues go, it is possible that their appearance

after you were GF is just a coincidence. Or, they had to some

extent been masked by the trouble the gluten was causing (can't say

that's too likely with the hair loss, but thought I'd throw it out

there anyway). It is possible that more time on the diet will

resolve the other issues, or they may be unrelated. I don't think

anyone can really answer that for certain.

Did you have a full workup for hormones, vitamin deficiencies, etc?

Sue in Denver

> I posted recently that my Prometheus Celiac Gene test just came

back

> negative. One year earlier I had a negative blood test but a

> questionable biopsy that showed an elevated T cell count but no

villi

> damage so I was put on a GF diet based on the biopsy. I just had

my

> one year follow up biopsy that showed T cells returned to a normal

> range...basically a healthy small intestine. So here is my

frustration:

>

> Based on the negative gene test my Dr was initially saying I could

go

> off the diet since I do not have celiac disease. I did not go off

the

> diet at the time since I had been on it a yeear and did not want to

> throw off the biopsy. Now that the biopsy is back he says he is

very

> pleased with the results and attributes the improvement to the GF

diet

> and says to stay on the diet even though the gene test is

negative.

>

> My symptoms had mainly been bloating after eating and constipation

and

> I was having some bleeding and acute reflux at the time I sought

> treatment. The gastro I went to was coincidentally a celiac

> specialist. I realize a golden rule in treating Gluten intolerance

is

> " how to you feel on the GF diet " ... but after a year of adhering to

> the gluten free diet I have seen some moderate improvement of GI

> symptoms but I also have had new symptoms that came on after I

went on

> the GF diet like hair loss, weakness and fatigue associated with

> orthostatic hypotension.

>

> Basically I am very confused. I feel like this diet is such a

dramatic

> lifestyle change for something that I feel is not 100% certain. It

> would be one thing if I felt great...the dr. says give the GF diet

> more time and maybe the other symptoms may improve. I do not think

I

> am being " glutened " from a secret source or the biopsy would not

be so

> clean. We've run tons of other blood tests for other autoimmune

stuff,

> all normal... Advice? Input? thanks for listening.

[Guest guest]

Interesting - I have also noticed that my hair started falling out more after going GF. Weird.

I haven't had any official diagnosis of celiac either, but my doctor says it's obvious that I have issues with gluten due to bloating, gas, diarrhea, itchy skin that I get when I eat it. The one blood test I had came back negative. I asked if we should do further blood tests or do the scope. She said, why bother searching for an official diagnosis when the end result will be to avoid gluten. Sounds good to me.

Trudy in Cali

> I posted recently that my Prometheus Celiac Gene test just came back> negative. One year earlier I had a negative blood test but a> questionable biopsy that showed an elevated T cell count but no villi> damage so I was put on a GF diet based on the biopsy. I just had my > one year follow up biopsy that showed T cells returned to a normal> range...basically a healthy small intestine. So here is my frustration:> > Based on the negative gene test my Dr was initially saying I could go> off the diet since I do not have celiac disease. I did not go off the> diet at the time since I had been on it a yeear and did not want to> throw off the biopsy. Now that the biopsy is back he says he is very> pleased with the results and attributes the improvement to the GF diet> and says to stay on the diet even though the gene test is negative. > > My symptoms had mainly been bloating after eating and constipation and> I was having some bleeding and acute reflux at the time I sought> treatment. The gastro I went to was coincidentally a celiac> specialist. I realize a golden rule in treating Gluten intolerance is> "how to you feel on the GF diet"... but after a year of adhering to> the gluten free diet I have seen some moderate improvement of GI> symptoms but I also have had new symptoms that came on after I went on> the GF diet like hair loss, weakness and fatigue associated with> orthostatic hypotension. > > Basically I am very confused. I feel like this diet is such a dramatic> lifestyle change for something that I feel is not 100% certain. It> would be one thing if I felt great...the dr. says give the GF diet> more time and maybe the other symptoms may improve. I do not think I> am being "glutened" from a secret source or the biopsy would not be so> clean. We've run tons of other blood tests for other autoimmune stuff,> all normal... Advice? Input? thanks for listening.

[Guest guest]

You can have damage similar to celiac from milk or soy intolerances (which

is why only the biopsy is not diagnostic).

However, you didn't post all your test results (AGA IgG, IgA, TTG-IgA (or

TTG-IgG if IgA deficient). Or which genes were found (and Prometheus is not

the best place to ahve this done, as they only identify the two major

" celiac genes " and none of the ones that are loosely linked with gluten

intolerance. At a minimu, the two IgA tests should be repeated and results

compared (and ifIgA deficient, the two IgG tests run instead).

And as others have told you - not all the genes associated with CD are

known. Roughly 2 to 5% (depending onhestudy) don't have one of the two major

genes. And most diagnosed with " gluten intolerance " have neither one.

Although the gold standard is recovery on the diet - only you know if this

is teh only change you made (did you avoid casein the entire time too, or

maybe stop eating something else, etc).

Your other symptoms sound thyroid related - a specialist up on the curent

(fairly new) standards should do some testing, including looking for

auto-immune thyroid problems, not just total TSH.

> -----Original Message-----

>

> I posted recently that my Prometheus Celiac Gene test just came back

> negative. One year earlier I had a negative blood test but a

> questionable biopsy that showed an elevated T cell count but no villi

> damage so I was put on a GF diet based on the biopsy. I just had my

> one year follow up biopsy that showed T cells returned to a normal

> range.

.... but after a year of adhering to

> the gluten free diet I have seen some moderate improvement of GI

> symptoms but I also have had new symptoms that came on after I went on

> the GF diet like hair loss, weakness and fatigue associated with

> orthostatic hypotension.

---

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[Guest guest]

Hi, I don't have Celiac's, (my daughter does) but once I tried one of those protein diet drinks and I started losing all kinds of hair. To me it's an indication of not enough of some vitamin needed. I would consult with a specialist about adding more vitamins to my diet.

TIA,

& Mike 909 980-2962

From: SillyYaks [mailto:SillyYaks ] On Behalf Of tverzosa@...Sent: Tuesday, August 30, 2005 12:36 PMTo: SillyYaks Subject: Re: Re: Advice Please

Interesting - I have also noticed that my hair started falling out more after going GF. Weird.

I haven't had any official diagnosis of celiac either, but my doctor says it's obvious that I have issues with gluten due to bloating, gas, diarrhea, itchy skin that I get when I eat it. The one blood test I had came back negative. I asked if we should do further blood tests or do the scope. She said, why bother searching for an official diagnosis when the end result will be to avoid gluten. Sounds good to me.

Trudy in Cali

> I posted recently that my Prometheus Celiac Gene test just came back> negative. One year earlier I had a negative blood test but a> questionable biopsy that showed an elevated T cell count but no villi> damage so I was put on a GF diet based on the biopsy. I just had my > one year follow up biopsy that showed T cells returned to a normal> range...basically a healthy small intestine. So here is my frustration:> > Based on the negative gene test my Dr was initially saying I could go> off the diet since I do not have celiac disease. I did not go off the> diet at the time since I had been on it a yeear and did not want to> throw off the biopsy. Now that the biopsy is back he says he is very> pleased with the results and attributes the improvement to the GF diet> and says to stay on the diet even though the gene test is negative. > > My symptoms had mainly been bloating after eating and constipation and> I was having some bleeding and acute reflux at the time I sought> treatment. The gastro I went to was coincidentally a celiac> specialist. I realize a golden rule in treating Gluten intolerance is> "how to you feel on the GF diet"... but after a year of adhering to> the gluten free diet I have seen some moderate improvement of GI> symptoms but I also have had new symptoms that came on after I went on> the GF diet like hair loss, weakness and fatigue associated with> orthostatic hypotension. > > Basically I am very confused. I feel like this diet is such a dramatic> lifestyle change for something that I feel is not 100% certain. It> would be one thing if I felt great...the dr. says give the GF diet> more time and maybe the other symptoms may improve. I do not think I> am being "glutened" from a secret source or the biopsy would not be so> clean. We've run tons of other blood tests for other autoimmune stuff,> all normal... Advice? Input? thanks for listening.

[Guest guest]

It certainly wasn't the diet--- unless you were not eating a balanced

diet, of course. Long term celiac causes malnutrition with loss of

vitamin D and calcium heading the loss chart. Have you been diagnosed?

Have you had blood tests done to assess your nutritional status?

Vitamin D deficiency caused a lot of my hair to fall out too and it

took considerable time for that to begin to reverse.

> Interesting - I have also noticed that my hair started falling out

> more after going GF.  Weird.

>  

[Guest guest]

I was never formally diagnosed - see my last post for the details. But the funny thing is, the same thing happened when I (stupidly) did Atkins. Since I've only been GF for about a month, would that be enough time to cause hair loss due to malnutrition from an unbalanced diet? I've definitely had healthier days, but there wasn't much of a change health-wise between pre-GF and GF. Hmmm. I'm just hoping it goes away soon.

While we're on the topic of healthy eating - I just have to add that I am very excited because I just signed up for weekly organic produce deliveries. I felt like I and DD weren't eating enough fresh veggies - although we definitely eat plenty of fruits.

Thanks for the input.

Trudy

-------------- Original message -------------- It certainly wasn't the diet--- unless you were not eating a balanced diet, of course. Long term celiac causes malnutrition with loss of vitamin D and calcium heading the loss chart. Have you been diagnosed? Have you had blood tests done to assess your nutritional status? Vitamin D deficiency caused a lot of my hair to fall out too and it took considerable time for that to begin to reverse.> Interesting - I have also noticed that my hair started falling out > more after going GF. Weird.>

[Guest guest]

Most protein drinks are very high in soy - which affects your thyroid -

which is the biggest offender in causing hair loss.

Unless you were on a diet drink only diet, you should have got enough

vitamins from other foods to prevent a deficiency of any one.

-----Original Message-----

Hi, I don't have Celiac's, (my daughter does) but once I tried one of those

protein diet drinks and I started losing all kinds of hair. To me it's an

indication of not enough of some vitamin needed. I would consult with a

specialist about adding more vitamins to my diet.

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

That's interesting. I was just drinking 1-2 shakes per day and that happened to me. I also started losing my hair as a teen ager. My mom gave me Shaklee vitamin drink (1977 or so) which helped, but it took years for my hair to grow back.

TIA,

& Mike 909 980-2962

From: SillyYaks [mailto:SillyYaks ] On Behalf Of K. OlandSent: Tuesday, August 30, 2005 1:25 PMTo: SillyYaks Subject: RE: Re: Advice Please

Most protein drinks are very high in soy - which affects your thyroid -which is the biggest offender in causing hair loss.Unless you were on a diet drink only diet, you should have got enoughvitamins from other foods to prevent a deficiency of any one.-----Original Message-----Hi, I don't have Celiac's, (my daughter does) but once I tried one of thoseprotein diet drinks and I started losing all kinds of hair. To me it's anindication of not enough of some vitamin needed. I would consult with aspecialist about adding more vitamins to my diet.---[This E-mail scanned for viruses by Declude Virus]