So Angry with my Dr. He Smirked at my mention of Celiac

Replies to This Discussion

Permalink Reply by Jayne Aston on October 22, 2009 at 11:08am

Those "Doctors" sound like they are from the dark ages. What is next? Leeches? There are some doctors over here that don't beleive that Celiac Disease exists. (I had one Doctor tell me to eat gluten free but it isn't really a disease)
Since you don't seem to be having much luck with Doctors, perhaps you might want to look into seeing a naturalpath.
I don't care what your health issues are, what you eat and drink matters, even with the little things like colds. (rest in bed and drink plenty of fluids)
My advice to you, is have the colonoscopy for sure, but insist they do an endo at the same time. (that is how my diagnoses was made) After the tests, go on a gluten free diet (we will all help) and I bet you will feel much better.

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Permalink Reply by Trish Altieri on October 22, 2009 at 1:05pm

I challenge you to take it one step further. Read "The Swiss Secret" and really get a hold of overall body wellness. I did the 3 week challenge and was transformed. Now I am on the maintenance and feel great.

You can take charge of your health. It doesn't matter what that doctor said. If you feel better by changing your diet, than do it! You don't need a test to tell you that you feel better.

I say this after being celiac for 13 years and battling Lyme disease for 1.5. What you eat makes all the difference in fighting the effects of chronic disease. After all, that is what both of these are anyway.

Good luck.

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Permalink Reply by Juhi on October 22, 2009 at 1:12pm

Hi Louise,
I'm Juhi from India, where about 70% of the food contains gluten. We're all wheat based! Doctors kept negating my intolerance for 9 months before I went myself and got tested. It came out negative as yours, but I've still been gluten free for 13 months.

Trust me, its the better way to live! My Hemoglobin shot upto the right levels by eating gluten free food, migraine problem went away and I'm generally more upbeat than before. I dread the confirmatory test but if you want to you can get it.

You need to consume gluten for about a week for that and then get an endoscopy that'll show the damage to your intestinal lining. I suggest go for it and settle the issue once and for all. Its difficult to live in doubt.

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Permalink Reply by Louise Denby on October 22, 2009 at 1:26pm

Thank you all so much for your replies!
Living with the NHS means you can't really demand they do certain things. Even if it is IBD surely gluten will aggrivate that problem?

I need to know that going GF is the right thing.

Can anyone tell me if my bloods are negative? I can't find any numbers on the net anywhere!

Thanks again

Lou x

Juhi said:

Hi Louise,
I'm Juhi from India, where about 70% of the food contains gluten. We're all wheat based! Doctors kept negating my intolerance for 9 months before I went myself and got tested. It came out negative as yours, but I've still been gluten free for 13 months.

Trust me, its the better way to live! My Hemoglobin shot upto the right levels by eating gluten free food, migraine problem went away and I'm generally more upbeat than before. I dread the confirmatory test but if you want to you can get it.

You need to consume gluten for about a week for that and then get an endoscopy that'll show the damage to your intestinal lining. I suggest go for it and settle the issue once and for all. Its difficult to live in doubt.

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Permalink Reply by Louise Denby on October 22, 2009 at 1:27pm

What is the Swiss Secret?? Im interested!

I agree with you that I am in control and not the Doc's. I have started listening to my body for a few years now. Just wish I could get some allergy testing done. I have had kineseology and another type done but not sure about the outcome! How else can people be tested? x

Trish Altieri said:

I challenge you to take it one step further. Read "The Swiss Secret" and really get a hold of overall body wellness. I did the 3 week challenge and was transformed. Now I am on the maintenance and feel great.

You can take charge of your health. It doesn't matter what that doctor said. If you feel better by changing your diet, than do it! You don't need a test to tell you that you feel better.

I say this after being celiac for 13 years and battling Lyme disease for 1.5. What you eat makes all the difference in fighting the effects of chronic disease. After all, that is what both of these are anyway.

Good luck.

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Permalink Reply by Nancy Morgan on October 22, 2009 at 2:01pm

Our stories are varied regarding how long we've suffered physically and at the hands of doctors who may only have the ability to think with one of their heads. I can't believe I'm saying this here but I feel a whole lot better. Actually, this is my cleaned up version. My talons come out when I here more stories of the hell so many go through.

We've all learned to take care of ourselves, only relying on the medical field when truly necessary. Even after the anger, we have to accept that the knowledge is way behind our needs.

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Permalink Reply by Louise Denby on October 22, 2009 at 2:23pm

Bless you all!
Im still having so much trouble finding normal IgG levels on the internet. I have no idea what is a normal level!
My biocard test was positive so that measured something yet Dr says negative! x

Nancy Morgan said:

Our stories are varied regarding how long we've suffered physically and at the hands of doctors who may only have the ability to think with one of their heads. I can't believe I'm saying this here but I feel a whole lot better. Actually, this is my cleaned up version. My talons come out when I here more stories of the hell so many go through.

We've all learned to take care of ourselves, only relying on the medical field when truly necessary. Even after the anger, we have to accept that the knowledge is way behind our needs.

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Permalink Reply by Jenifer Bremehr on October 22, 2009 at 4:58pm

Louise, which lab did your tests? Each lab company has different lab values for the same tests, but it depends on the machines that they use. If you can let me know which lab did your tests, I might be able to answer your questions. Also, another thought is to call your doctors office where you had the labs done and ask for a copy of the labs. It should have the values listed. I hope this helps and we all feel your pain. Hang in there.

I finally went and seen a CD specialist, which is something to consider for yourself. I dont have CD but am gluten intolerant-severely. He told me that if the whole world went gluten free there would be no reason for any doctors! You cant go wrong by any means going gluten free, but it is a long hard road. But if you feel better as so many of us have by taking that long road, go for it! We are here for you and will cheer you on on your good days and will cry with you on the bad days. I wish you the best of luck!

Have a gluten free day!

Jen

ps: I pulled some of my old labs, according to Prometheus Lab I had the Celiac Plus lab done and the IgG reference range is: less than 10.0 U/ml and the IgA is less than 5.0 U/ml which according to this, your levels are normal. The reference range is the same for another lab company here in the States (Quest Lab) which tells me that for here, this might be the standard. I hope this helps, but will continue to investigate. If I find something, I will post it for you!
Louise Denby said:

Bless you all!
Im still having so much trouble finding normal IgG levels on the internet. I have no idea what is a normal level! My biocard test was positive so that measured something yet Dr says negative! x Nancy Morgan said:

Our stories are varied regarding how long we've suffered physically and at the hands of doctors who may only have the ability to think with one of their heads. I can't believe I'm saying this here but I feel a whole lot better. Actually, this is my cleaned up version. My talons come out when I here more stories of the hell so many go through.

We've all learned to take care of ourselves, only relying on the medical field when truly necessary. Even after the anger, we have to accept that the knowledge is way behind our needs.

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Permalink Reply by Jenifer Bremehr on October 22, 2009 at 4:59pm

Nancy, you are cracking me up! But.....you are SO right!

Jen

Nancy Morgan said:

Our stories are varied regarding how long we've suffered physically and at the hands of doctors who may only have the ability to think with one of their heads. I can't believe I'm saying this here but I feel a whole lot better. Actually, this is my cleaned up version. My talons come out when I here more stories of the hell so many go through.

We've all learned to take care of ourselves, only relying on the medical field when truly necessary. Even after the anger, we have to accept that the knowledge is way behind our needs.

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Permalink Reply by Stephanie Schlosser on October 22, 2009 at 5:09pm

Hi,

Your doctors are from the stone age, but unfortunately that's typical. Access to information has changed too quickly for them to keep up. Likely what you have is a type 3 allergy to gluten. You can have your allergies tested here: http://www.food-intolerance.ca/en/ It is a Canadian company so you might have to contact them directly to see if they can receive your blood sample. Ask for Mark and tell him that Stephanie from Sesen sent you. Extended care in Canada often covers part of the test cost, but I don't know for the USA if its the same. You can do cheaper tests, but this one's accuracy is guaranteed. I follow a diet strictly removing all my food intollerances and no one would ever know the "diagnosis" that medical doctors gave me years ago, it wasn't celiac I was tested negative about 4 times over the course of many years. Listen to your body and trust it.

Stephanie

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Permalink Reply by Larry Janik on October 22, 2009 at 5:56pm

Hi Louise,
I heard pretty much the same thing from my doctors. My family also has a history of autoimmune disease ( MS, diabetes, thyroid disease, cancer, rheumatoid arthritis, Sjogren's ), and since we seem to fall into some grey area where we don't get sick enough to be obviously celiac, none of us were diagnosed as to the cause of our autoimmune diseases, until I became sick enough to notice that it was food related, and it was 4 hours after I ate it that the gluten attacked. I am still having a hard time getting my family to go gluten free because the doctors don't diagnose them. It is so frustrating! We have been given this poison our entire lives, before we could even talk, and told that it is good! It is so frustrating that wheat is blamed last, if it is even blamed at all! The pro-wheat marketing dept. seems to have done a great job of brainwashing everyone into thinking how wonderful it is. I wasn't even aware that it was an allergen until a few years ago, as all the healthy living books preach "eat whole grains" they're GOOD for you. Sorry for the rant, but I feel better now... I have the DQ-8,DQ-6 gene combination, type O pos blood, and looking at my family history, I believe that we are ALL gluten intolerant.

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Permalink Reply by Jenifer Bremehr on October 22, 2009 at 6:26pm

Something that most of us have forgotten is that when we are born and started on foods, we are started out on rice! There is a reason for it, and it is because our digestive systems cant handle the "other" grains. It is believed that the other grains are to hard to digest for the new little digestive systems of infants, causing constipation and colic, but I believe that there is more to this than has been discovered yet. Or maybe it has been discovered and like so many other things is not brought out because it is all about the money. There is money in gluten! Something to think about.

I have the DQ-8, Heterozygous gene and am O positive also. For those of us with this type of blood, most grains are not good for us. Are you familiar with the blood type diet? It is interesting. It is theorized that certain blood types do better with certain foods than other blood types. If you are not familiar with this look it up. I have a copy of the blood type diet for the "O"'s, and most of the bad things listed on there make me either sick, or really bother my stomach.

Vent all you want!

Have a gluten free day!

Jen

Larry Janik said:

Hi Louise,
I heard pretty much the same thing from my doctors. My family also has a history of autoimmune disease ( MS, diabetes, thyroid disease, cancer, rheumatoid arthritis, Sjogren's ), and since we seem to fall into some grey area where we don't get sick enough to be obviously celiac, none of us were diagnosed as to the cause of our autoimmune diseases, until I became sick enough to notice that it was food related, and it was 4 hours after I ate it that the gluten attacked. I am still having a hard time getting my family to go gluten free because the doctors don't diagnose them. It is so frustrating! We have been given this poison our entire lives, before we could even talk, and told that it is good! It is so frustrating that wheat is blamed last, if it is even blamed at all! The pro-wheat marketing dept. seems to have done a great job of brainwashing everyone into thinking how wonderful it is. I wasn't even aware that it was an allergen until a few years ago, as all the healthy living books preach "eat whole grains" they're GOOD for you. Sorry for the rant, but I feel better now... I have the DQ-8,DQ-6 gene combination, type O pos blood, and looking at my family history, I believe that we are ALL gluten intolerant.

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