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Lymetoo

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Lymetoo Contributor
Lymetoo
Posted

Hi gang! I'll try to tell you what's going on with me with a little background first. Was told I'm allergic to wheat about 35 yrs ago. Stayed away from it for about 24 yrs. Began eating it off and on with little negative consequences for quite awhile.

Dxd with Fibromyalgia around 1980. Dxd with Interstitial Cystitis in 1992. Retired from teaching on disability 12 yrs ago. Dxd with Lyme disease 6 yrs ago.....found out I've probably had it most of my life......at least for 48 yrs. Doing much better now.......but.......

Began having extreme abdominal pain and bloating about 7 wks ago. I can safely eat proteins and vegetables that are low on glycemic index....no starches. [Oh...I also have systemic yeast, which I battle constantly......was getting the upper hand on that recently........This latest bout, however, is NOT like my usual yeasty symptoms.] Anyway, I will have a consult with a dr this Friday, who will most likely schedule a colonoscopy for me sometime soon. :o

My GP thinks I have diverticulosis. I was given a saliva test about 5 yrs ago for cortisol levels and it showed high levels of Gliadin. My Lyme dr told me at that time to stay away from wheat and gluten. I was tested for celiac 30 yrs ago by biopsy and it was negative. So I thought I was in the clear in that regard.

I need to know what tests to ask my dr for......what labs, and do I HAVE TO eat alot of gluten for the test to come back positive?? I don't think I was eating much gluten when this gliadin test showed positive. I love bread, but I don't want the yeast problem to begin all over again.

Thanks so much for your help!! :)

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Lymetoo Contributor
Lymetoo
Posted
  • Author

Hello?

mouse Enthusiast
mouse
Posted

I am sorry that no one has answered your question. People will be doing so shortly, so bear with us. You should be consuming the equivalant of 3 slices of bread a day for 3 to 6 months before you test. Many on here just went gluten free and did not get the official diagnosis of Celiac. They just wanted to be well. There are 5 tests that are ordered and someone will post the list for you - I am sure. Welcome to the forum and yes, this sounds like Celiac.

Lymetoo Contributor
Lymetoo
Posted
  • Author

You should be consuming the equivalant of 3 slices of bread a day for 3 to 6 months before you test.

sounds like Celiac.

Lymetoo Contributor
Lymetoo
Posted
  • Author

I guess this newbie is way too boring for you folks!!! :P

par18 Apprentice
par18
Posted
Hi gang! I'll try to tell you what's going on with me with a little background first. Was told I'm allergic to wheat about 35 yrs ago. Stayed away from it for about 24 yrs. Began eating it off and on with little negative consequences for quite awhile.

Dxd with Fibromyalgia around 1980. Dxd with Interstitial Cystitis in 1992. Retired from teaching on disability 12 yrs ago. Dxd with Lyme disease 6 yrs ago.....found out I've probably had it most of my life......at least for 48 yrs. Doing much better now.......but.......

Began having extreme abdominal pain and bloating about 7 wks ago. I can safely eat proteins and vegetables that are low on glycemic index....no starches. [Oh...I also have systemic yeast, which I battle constantly......was getting the upper hand on that recently........This latest bout, however, is NOT like my usual yeasty symptoms.] Anyway, I will have a consult with a dr this Friday, who will most likely schedule a colonoscopy for me sometime soon. :o

My GP thinks I have diverticulosis. I was given a saliva test about 5 yrs ago for cortisol levels and it showed high levels of Gliadin. My Lyme dr told me at that time to stay away from wheat and gluten. I was tested for celiac 30 yrs ago by biopsy and it was negative. So I thought I was in the clear in that regard.

I need to know what tests to ask my dr for......what labs, and do I HAVE TO eat alot of gluten for the test to come back positive?? I don't think I was eating much gluten when this gliadin test showed positive. I love bread, but I don't want the yeast problem to begin all over again.

Thanks so much for your help!! :)

Are you telling me you think have had Lyme disease for 48 years?

Tom

evie Rookie
evie
Posted
I guess this newbie is way too boring for you folks!!! :P

No, they are just not online just now!! but i know how you feel you want instant answers. :( I am not as well versed as many here on tests. I had endoscopy several months ago that was negative then I swallwed a capsule camera that showed small intestine damage & satisfied that GI that I had celiac disease & started gluten free. He sent me to University GI who wanted mt to go on gluten for 3 months< I said as much diarrhea as I was having was not sure i would make it thru..had alredy lost 20 lbs. so he saud we will diagnose you "presumed celiac" and he sent me to dietitician but really the most help I have had has been from this forum. people here ae so helpful and share there wins, searches and helpfulness. I too have probably had this problem most of my life, been gluten free for close to 6 months, had very little changes 1st few mo. but finally started getting bit better.

Seems to be normal to have backsets, in one now, If you want ask me questions and I will answer if can.

It is a long process but we go at our own pace, all are different. :):ph34r::) evie

Are you telling me you think have had Lyme disease for 48 years?

Tom

I think she meant had had celiac for 48 years, tom <_<

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Lymetoo Contributor
Lymetoo
Posted
  • Author

Thanks for replying, tom, evie, and armetta!! I thought maybe I had Leprosy too and it was obvious only to you guys!! :blink::lol:

Yes, Tom....I'm saying I've had Lyme for 48 yrs. I'm one of the "lucky" ones. Mine is not as severe, and IN YOUR FACE, but since it was a milder version it went undiagnosed until I had alot of damage from it. I also have babesia from a tick bite. It is similar to malaria. I forgot to put that on my signature.

I'm a regular on the Lyme discussion board, so am trying to figure things out here. This board is very different and not as busy as the Lyme board. Hence, my impatience with no responses. Sorry....comes with the territory of having Lyme!!

I'm a little distressed that if I have celiac, there's not going to be much I can eat....and I LOVE to eat out when I can!! I can't eat very much sugar or starches because of the yeast issues. I had that even before my years of antibiotic treatment for Lyme. I've been off antibiotics now since last Sept and trying to get my intestinal flora back in balance.

Thanks for your help thus far!

mommida Enthusiast
mommida
Posted

If a gluten challenge is not acceptable for you, try genetic testing or go gluten free without the diagnoses.

L.

(Gluten challenges can be dangerous, and some doctors do not advise this practice.)

par18 Apprentice
par18
Posted
Thanks for replying, tom, evie, and armetta!! I thought maybe I had Leprosy too and it was obvious only to you guys!! :blink::lol:

Yes, Tom....I'm saying I've had Lyme for 48 yrs. I'm one of the "lucky" ones. Mine is not as severe, and IN YOUR FACE, but since it was a milder version it went undiagnosed until I had alot of damage from it. I also have babesia from a tick bite. It is similar to malaria. I forgot to put that on my signature.

I'm a regular on the Lyme discussion board, so am trying to figure things out here. This board is very different and not as busy as the Lyme board. Hence, my impatience with no responses. Sorry....comes with the territory of having Lyme!!

I'm a little distressed that if I have celiac, there's not going to be much I can eat....and I LOVE to eat out when I can!! I can't eat very much sugar or starches because of the yeast issues. I had that even before my years of antibiotic treatment for Lyme. I've been off antibiotics now since last Sept and trying to get my intestinal flora back in balance.

Thanks for your help thus far!

Lymetoo Contributor
Lymetoo
Posted
  • Author

Is the genetic testing expensive? What's up with this saliva test I had?? My score was 66 and anything over 15 is considered high. Do you think this test holds any water at all??

par18 Apprentice
par18
Posted
Thanks for replying, tom, evie, and armetta!! I thought maybe I had Leprosy too and it was obvious only to you guys!! :blink::lol:

Yes, Tom....I'm saying I've had Lyme for 48 yrs. I'm one of the "lucky" ones. Mine is not as severe, and IN YOUR FACE, but since it was a milder version it went undiagnosed until I had alot of damage from it. I also have babesia from a tick bite. It is similar to malaria. I forgot to put that on my signature.

I'm a regular on the Lyme discussion board, so am trying to figure things out here. This board is very different and not as busy as the Lyme board. Hence, my impatience with no responses. Sorry....comes with the territory of having Lyme!!

I'm a little distressed that if I have celiac, there's not going to be much I can eat....and I LOVE to eat out when I can!! I can't eat very much sugar or starches because of the yeast issues. I had that even before my years of antibiotic treatment for Lyme. I've been off antibiotics now since last Sept and trying to get my intestinal flora back in balance.

Thanks for your help thus far!

The reason I asked about the Lyme was that a woman in my support group said her Celiac Disease was "triggered" by her Lyme Disease. She said she had Celiac symptoms for 2 years after she was Dx'd with Lyme. After she went gluten free everything seemed to get better. That leads me to the other poster who suggested that maybe you should go gluten free. I don't see that it would hurt. It will either help or not.

Tom

mommida Enthusiast
mommida
Posted

I'm not familiar with the saliva test to answer your question properly. Depending on your insurance and your doctor, genetic testing may be covered.

My Celiac testing was a series of errors by an ignorant doctor. My daughter's gluten challenge ended when she was hospitalized for dehydration. We are not officially diagnosed according to the doctors we were seeing. We are doing much better on the gluten free diet, and not wasting any more time and money trying to prove we need to be on a gluten free diet.

L.

judy05 Apprentice
judy05
Posted
Is the genetic testing expensive? What's up with this saliva test I had?? My score was 66 and anything over 15 is considered high. Do you think this test holds any water at all??

Why do you want more testing, you seem to have a positive result by avoiding wheat and glutens. My test was also negative for Celiac and so was the biopsy. My GI insists that I can eat gluten and I insist that I can't. It's your body and unless you have to prove something to someone then i would go gluten free. You will feel much better in so many ways. Welcome to the board it takes a while for answers to come but they will. This board has been a godsend for me!

Rikki Tikki Explorer
Rikki Tikki
Posted

Welcome Lyme. Give us a chance to answer, many of us work. If you have a steady intake of gluten for even a couple of weeks prior to the test your blood test should be positive for celiac.

I believe from my experience the biopsy might not be positive without a more intensive intake of gluten.

Lymetoo Contributor
Lymetoo
Posted
  • Author

Ah!!! That's the big difference with this board!! Most of you are able to WORK!!! Hadn't thought about that!! Hats off to you all!!!! The Lyme board is full of people with nothing else to do than "chat" with their buddies. Some are able to work, but many are bedridden or homebound.

I'm the lucky one. I am able to get out and around quite a bit now. I feel I have my life back even though I have a lot of physical problems still.

I guess it would just help me to know that I really have this. I hate going through the difficulties of the diet without good reason. I AM eating gluten-free right now and feeling better....but I'm also doing the low-residue diet for diverticulosis and feeling better from that too.......not sure which is the one making me feel better.

Well, I'm anxious to see how I do on the gluten-free.....maybe my muscle and joint pain will disappear?? I'm taking mangosteen juice and that takes care of alot of pain and fatigue...but wouldn't it be nice to have it completely GONE!>??

Rikki Tikki Explorer
Rikki Tikki
Posted

That would be great Lyme too. There are a lot of people that feel so much better after starting the gluten-free diet that regardless if they have a diagnosis or not they stay gluten-free. You might want to consider that, sometimes just feeling better is enough. The food is not that bad and the diet is not to hard to handle once you get a hold of it and we will help you through the difficult times.

Anyway, welcome to the boards.

evie Rookie
evie
Posted
Is the genetic testing expensive? What's up with this saliva test I had?? My score was 66 and anything over 15 is considered high. Do you think this test holds any water at all??

I do not know about the saliva test either but from what I understand unless you are very lucky to get a REALLY knowledgeable GI for any celiac testing you may be on your own in working/ celiac disease. It seems celiac has not been taken seriously by most doctors, maybe because many medical schools teach very little about it. It seems the theory has been that celiac is uncommon in US, but very well known in england, ireland, scotland and italy, there is even more of it there. We learn from them, sorry I misundestood about your time having lyme disease, you probably have arthritis like pain too. Deer are very thick here in Iowa, thus many deer ticks & ticks of all kinds are abundant this year.

If you can go to gastroenterologist @ a university they seem to be diggers more than some GI's. Many of us have multiple health problems and some are very young yet. It is quite common to take 11 years before a celiac is diagnosed so you know that means a lot of years being not healthy, mine was many more than that.

Had some food allergies as a youngster, first allergies showed up in my forties, add 30+ years to that and I finally got diagnosed when I got much sicker. so now I am on the road to better health!! :):rolleyes::)

Best of health soon to you!! evie

Lymetoo Contributor
Lymetoo
Posted
  • Author

WEll, fortunately, my "Lyme Doctor" is very open about things. He will explore any and all possibilities. He is very brilliant as well. I don't know what I would do without him! He would run any test I asked for, that's for sure.

Don't know what this dr will say that I will see Friday. He's the colonoscopy expert, but I don't even know if he's a gastroenterologist or what. Saw one of those guys way back when I had the biopsy for celiac.

Wish now I had stayed on the danged diet!!

Hey Iowa gal!! I'm in Missouri! I'm actually a 6th generation Texan, however! Got the Lyme in Texas.

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