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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted
It is rare in my area of the country though, from what I understand. I live in Evansville, Indiana. We are almost on the tip of the state near Kentucky in Southwestern Indiana.

Don't think that. I got it in Southern Ohio and know three other people who were diagnosed here last year. Of course, NONE of the three of us were diagnosed here, we all had to go out east for diagnosis. When there are no doctors in an area diagnosing a disease, it will seem rare even though it is not. Trust me, it's in Evansville!

BTW, I was exposed from 1972-1975, so it's not new here either.

I also saw in your post the comment about digestive enzymes ... they won't help with gluten intolerance either.

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CarlaB Enthusiast
CarlaB
Posted
Open Original Shared Link

Its actually pretty prevelant in Indiana.

Heres a risk map for the whole US.

Open Original Shared Link

ROFLMAO!!!! :lol::lol::lol: I got it in an area of "NO RISK"!!!!!

Evansville looks to be a medium risk.

CarlaB Enthusiast
CarlaB
Posted
I reacted to NICKEL, which is probably a large part of why I can't wear jewelry anymore. Hopefully since she treated me, I can wear earrings...I'll test it out tomorrow. I reacted to cadmium, chromium, you name it. Oddly lead was okay, lol.

I remember someone posting on the board that they couldn't wear blue jeans because of the nickel in the button.

CarlaB Enthusiast
CarlaB
Posted
-------------------------------------------------------------

For me, that was a symptom of Babesia, a coinfection of Lyme disease. Be sure to get treated for that one.

YES, it's ME!!! I've been visiting family down in Texas and generally goofing off for the past 4-5 wks. So how many folks do we have here with Lyme disease now?????

Hi Lymetoo, I just saw my doc in NY for the first time. I'll email you about the appt. ... I didn't think of it when I sent it to everyone else. I am being treated for babesia ... and I have those weird feelings, too, that noglugirl described. I feel kind of like I've indulged a little too much in alcohol while on a ship in a storm. :P And I have the attention span of a 12 year old boy with ADD.

Noglugirl, my meds are VERY expensive, so just getting a diagnosis isn't enough. You might want to look into getting insurance. Starbucks is known for their health insurance ... you have to work 20 hours a week to get it.

lonewolf Collaborator
lonewolf
Posted

Hi Carla - I never post here in OMG, but I saw that you were the last poster and was wondering how your appointment in NY went. I hope you got some answers and will start getting better soon!

dlp252 Apprentice
dlp252
Posted
Andrea....its totally true...mercury is highly toxic to the body and can cause disease.

Donna, I have more problems on my left side too...this happens to be the side that I had the tooth that was bothering me after they put in the crowns...the one where I could feel gases coming out...I had a root canal which didnt help anything and I still had problems.

Dr. Adams suggessted I have the tooth removed because who knows what it could be doing to my health...even though noone could find a problem....my body was telling me otherwise...I had it pulled and no problems with my teeth since.

That side is weaker in my bioset "brain testing" too. <_<

Donna, when you go to Dr. Adam's office ask them to play the video about amalgams and the study of putting amalgam in a sheep. HOLY COW...(or maybe I should say HOLY SHEEP).....I doubt anyone who watches that video would want to have amalgam fillings in their mouth. Yeah....after 6 months more than half of the mercury had leached out and was found primarily in the sheeps liver and brain...but also in alot of other tissue and organs. CRAZY.

I think I'm afraid to see the video. :lol:

I remember someone posting on the board that they couldn't wear blue jeans because of the nickel in the button.

:o Yikes! I bet nickel is in a lot of things I don't realize. :(

****

I forgot one of the most interesting things about today's appointment. Injections came up. She had a weird look on her face with that one so said it questioningly. I get allergy shots once a month now, and for the past 3-4 months I've been having allergic reactions to them--I just had one a couple of weeks ago and they had to cut the amounts way down so I wouldn't react. I got a small reaction, but just a slight pick spot--very small. But the twwo times before that I got huge red blotches and itching at the shots sites. She then asked about vacinations to which I said that since I've been reacting to my allergy shots and because of my amalgams I decided NOT to get a flu shot this year because of the mercury issue.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I remember someone posting on the board that they couldn't wear blue jeans because of the nickel in the button.

It's in almost every wristwatch on the market, too. Even plastic watches have metal buckles or metal backs. :ph34r:

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
I forgot one of the most interesting things about today's appointment. Injections came up. She had a weird look on her face with that one so said it questioningly. I get allergy shots once a month now, and for the past 3-4 months I've been having allergic reactions to them--I just had one a couple of weeks ago and they had to cut the amounts way down so I wouldn't react. I got a small reaction, but just a slight pick spot--very small. But the twwo times before that I got huge red blotches and itching at the shots sites. She then asked about vacinations to which I said that since I've been reacting to my allergy shots and because of my amalgams I decided NOT to get a flu shot this year because of the mercury issue.

Why the weird look, I wonder?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
-------------------------------------------------------------

For me, that was a symptom of Babesia, a coinfection of Lyme disease. Be sure to get treated for that one.

YES, it's ME!!! I've been visiting family down in Texas and generally goofing off for the past 4-5 wks. So how many folks do we have here with Lyme disease now?????

Hi, Lymetoo, nice to see you!

I don't know if I should count as a Lyme Lady or not--I did have a suspicious insect bite about 20 years ago in Massachusetts (after growing up in Illinois and spending summers at camps in Wisconsin and Minnesota),. The bite got infected (cellulitis), and I was immediately treated with IV antibiotics and a couple of weeks worth of oral antibiotics. I have hardly ever taken antibiotics, either before or since--maybe 4 or 5 times total in my life?

Anyway, I probably don't count in the Lyme count here, but I keep my eyes on all the brilliant research you all are doing! (You never know....)I DO know that I have a problem with mercury (and nickel and gluten...).

CarlaB Enthusiast
CarlaB
Posted
Hi Carla - I never post here in OMG, but I saw that you were the last poster and was wondering how your appointment in NY went. I hope you got some answers and will start getting better soon!

Thank you for checking in on me, that was very sweet. :wub: I posted last night a few of the details about my appt. If you're interested in all the details, pm me your email address, I'm only posting generalities here.

Lymetoo Contributor
Lymetoo
Posted
Hi Lymetoo, I just saw my doc in NY for the first time. I'll email you about the appt. ... I didn't think of it when I sent it to everyone else. I am being treated for babesia ... and I have those weird feelings, too, that noglugirl described. I feel kind of like I've indulged a little too much in alcohol while on a ship in a storm. :P And I have the attention span of a 12 year old boy with ADD.

Glad you got the appointment. Yes, please PM me or email me. I don't know if you have my email address.

Lymetoo Contributor
Lymetoo
Posted
My immune system must still be fighting stuff off because I never get sick...I dont think I've had a cold in over a ayear. I havent got sick at all..

That's a known problem with having a suppressed immune system. [the not getting communicable stuff]

I would really suspect Lyme. Would you send me your test results again?? [not sure if I ever saw them] Didn't you have Lyme-specific bands???

NoGluGirl Contributor
NoGluGirl
Posted
I don't shop at either, lol. Before BioSET I'd only been to the Great Mall once before. Last week I arrived very early so decided to look around and found myself in Kohls, lol. I could think of worse places to find myself. :lol: Anyway, it's kind of like Mervyns...they carry the same kind of merchandise and even some of the same brands. I gave up on Valley Fair years ago, and I live just down the street a couple of miles. Parking is always a nightmare, so unless I go at 9:45 to get a decent spot, I just don't go. I DO like some of the stores since they expanded, but I too get very lost there.

Hum, maybe the growth on my bile/pancreatic duct (ampulla) was connected to all this somehow...I've had two root canals along with the stupid amalgam thing. The last endoscope I had back in July still showed the ampulla enlarged, it was just that they said the cells weren't pre-cancerous. Stupid amalgams! :angry:

This has been one of my main symptoms for the last year. At first I used to call it *dizziness* but realized that means something different to doctors...so now I describe it as feeling as if my brain is floating. It was really bad around the beginning of last year and for several months afterwards, but couldn't get my doctor to look at me--she took my pulse and declared me fine, so I switched doctors. I don't know if we have ever determined what caused them, but my dentist seems to think the amalgams could be responsible, and the HN doctors think it's connected to my adrenals, lol. I think it's probably a combination of things really, but I can say that in the last couple of months or so, I've hardly noticed that feeling anymore. So, it really could be both the amalgams and the adrenals because I've been removing the amalgams and taking lots of adrenal support in the last couple of months.

Dear Donna,

Wow, who would have thought? I have had Thyroid trouble, but this seems more severe. This started way before I had any amalgams put in. I made sure when they did get put in (my first last year) that they were composite fillings. I am scared to death of mercury poisoning! I read a book about it and its connection to Alzheimer's and mental illnesses like schizophrenia by Tom Warren called "Beating Alzheimer's". It is a great book. Much of what he talks about is so fascinating! My grandmother has Alzheimer's and I am so afraid of getting it. Oh God, and lately, I worry I have it though I am only 24, because things are foggy lately more than they used to be. Stress is likely part of that. Still, I am concerned. I am so glad other people know what is causing it. This has been freaking me out. I do not plan on getting anything but composite fillings in the future, either.

Sincerely,

NoGluGirl

NoGluGirl Contributor
NoGluGirl
Posted
Hi Lymetoo, I just saw my doc in NY for the first time. I'll email you about the appt. ... I didn't think of it when I sent it to everyone else. I am being treated for babesia ... and I have those weird feelings, too, that noglugirl described. I feel kind of like I've indulged a little too much in alcohol while on a ship in a storm. :P And I have the attention span of a 12 year old boy with ADD.

Noglugirl, my meds are VERY expensive, so just getting a diagnosis isn't enough. You might want to look into getting insurance. Starbucks is known for their health insurance ... you have to work 20 hours a week to get it.

Dear CarlaB,

I am glad someone else is on the same wave length (get it, boat, wave length) He he. I need insurance desperately, but do not know what to do. Despite applying in a bunch of places since September, I have gotten nothing. I did not try Starbucks, yet though. And, even better, 20 hours would be perfect! I go to college, so that would work out well. Thanks for the tip. I will see if I can apply there. We have one nearby.

Sincerely,

NoGluGirl

CarlaB Enthusiast
CarlaB
Posted
Dear CarlaB,

I am glad someone else is on the same wave length (get it, boat, wave length) He he. I need insurance desperately, but do not know what to do. Despite applying in a bunch of places since September, I have gotten nothing. I did not try Starbucks, yet though. And, even better, 20 hours would be perfect! I go to college, so that would work out well. Thanks for the tip. I will see if I can apply there. We have one nearby.

Sincerely,

NoGluGirl

Be persistant ... sometimes it's just a matter of timing, whether there's an opening. It may help if you are a regular there and get to know the people who work there. I always chat with the employees when I'm in and they're not busy. They are known for their insurance benefits for part-timers. They have had this as a perk since the beginning. I always joke that when I grow up I'm getting a job at Starbucks (I'm 43 and have six kids :P ).

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I'm not too sure why this is now "The Lyme Disease Thread".....it wasnt my idea....and I dont think its a fitting title. I dont know.....what do you guys think?? Is this the lyme disease thread?? :unsure:

How would you describe the topic or what do you think an appropriate title would be.

I think the way it stand now is kind of misleading but then again so was "maybe I can eat dairy again". :huh:

Oh...and for the record....I cant eat dairy anymore. I stopped eating ice cream :o ....it wasnt hard to do but I'm really worried about losing weight without it. :(

Anyways, I dont think people will benefit from the thread with a title that only covers one of many things that we've discussed and researched here.

I know I already asked you guys what you thought about changing the subtitle....seemed like everyone wanted to leave it as is...what do you guys think now??

miamia Rookie
miamia
Posted
I'm not too sure why this is now "The Lyme Disease Thread".....it wasnt my idea....and I dont think its a fitting title. I dont know.....what do you guys think?? Is this the lyme disease thread?? :unsure:

How would you describe the topic or what do you think an appropriate title would be.

I think the way it stand now is kind of misleading but then again so was "maybe I can eat dairy again". :huh:

Oh...and for the record....I cant eat dairy anymore. I stopped eating ice cream :o ....it wasnt hard to do but I'm really worried about losing weight without it. :(

Anyways, I dont think people will benefit from the thread with a title that only covers one of many things that we've discussed and researched here.

I know I already asked you guys what you thought about changing the subtitle....seemed like everyone wanted to leave it as is...what do you guys think now??

Hey rachel-

I agree that lyme is to specific we talk about so many issues here candida, food alleregies, thyroid- are all as prevelant I would say - how can we possibly capture everything we cover here in a subtitle it would have to be a sub essay at least.

I am thinking seriously about giving the bio set thing a chance. I am going to talk to my doctor about it again. How long have you been doing it now? I ahve at least 3 more weeks of the antiobiotic treatment left and then we are going to evaluate how I am feeling. I am half way through though.

So no more ice cream- wow!! Does that leave you with only 4 foods?

Miamia

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I think this should be the "Brilliant-Research-Done-by-the-People-Who-Are-Actually-Living-With-the-Problems" thread. :)

dlp252 Apprentice
dlp252
Posted
-------------------------------------------------------------

For me, that was a symptom of Babesia, a coinfection of Lyme disease. Be sure to get treated for that one.

YES, it's ME!!! I've been visiting family down in Texas and generally goofing off for the past 4-5 wks. So how many folks do we have here with Lyme disease now?????

Can one have Babesia without having Lyme? I've been having testing by BioSET and that testing didn't show any Lyme connection....but I'm not sure they also tested for the co-infections. I still have lots of symptoms of Lyme and/or Babesia, but without it showing up on the bioSET testing I don't know if I'll get the WB done...I may if I go see Rachel's doctors cuz they specialize in both mercury and lyme, but I don't know otherwise. My symptoms can also be from mercury, which is probably way more likely.

It's in almost every wristwatch on the market, too. Even plastic watches have metal buckles or metal backs. :ph34r:

Yikes, no wonder I can't wear watches unless they are really loose. :o

Why the weird look, I wonder?

I got the impression it doesn't come up much for her, so she was surprised, lol. :lol:

Dear Donna,

Wow, who would have thought? I have had Thyroid trouble, but this seems more severe. This started way before I had any amalgams put in. I made sure when they did get put in (my first last year) that they were composite fillings. I am scared to death of mercury poisoning! I read a book about it and its connection to Alzheimer's and mental illnesses like schizophrenia by Tom Warren called "Beating Alzheimer's". It is a great book. Much of what he talks about is so fascinating! My grandmother has Alzheimer's and I am so afraid of getting it. Oh God, and lately, I worry I have it though I am only 24, because things are foggy lately more than they used to be. Stress is likely part of that. Still, I am concerned. I am so glad other people know what is causing it. This has been freaking me out. I do not plan on getting anything but composite fillings in the future, either.

I haven't done too much reading on Mercury...just off the internet here and there and what's been posted on this thread, but it definitely sounds scarey. I think you're wise to not have any amalgam put in! Alzheimer's ran in my father's family, but fortunately I'm not blood related to them (dad adopted me), lol.

I think this should be the "Brilliant-Research-Done-by-the-People-Who-Are-Actually-Living-With-the-Problems" thread. :)

I like it!!! :lol:

dlp252 Apprentice
dlp252
Posted

Ah Rachel, sorry about the ice cream, but I think in the end you'll be better off and the stupid candida will die faster. Stupid candida!

To everyone: What facial cleansers and moisturizers do you use?

I ask here because so many can't do stuff with fragrances, etc. I used Cetaphil for years, but my face was breaking out big time last year, so I switched to Proactive. Proactive actually worked great and my face looked and felt great. Well, in the last week or so, my jaw line started itching, and I noticed that the skin feel very rough. It doesn't look rough and there is no specific redness to that spot (but my face does seem a little redder than normal all over). And, in the last couple of days there are now rougher spots in other places too. Can all the supplements and meds etc. be changing my skin? You'd think that it would get oilier not dryer... If I'm absorbing more nutrients now, you'd think it would change for the better, lol. Anyway, I thought this would be a good group to ask about what is used, lol.

I woke up thinking about yesterday's appointment and my issues and what not. I think I may actually starting to accept that I have a candida issue, and that I've had it a long time, lol. I never did any sort of candida treatment longer than 6 months, and that 6 months was just the diet, not really any antifungals. I took the antifungals for only about 3 months I think. In denial, I bought a crave chocolate brownie yesterday and ate the whole thing...not only that, I bought some gluten free corn dogs at Whole Foods...I've been waiting forever for them to carry them and NOW they do, lol. So I ate one...today my legs are itchy! They haven't itched in weeks, so it's either the sugar, chocolate or corn (the hot dog was all beef, which I've been eating all along) or all of them.

I think the amalgams are responsible for the candida, and my horrible sweet tooth didn't help to keep it in check.

I also think I actually have celiac. I have the gene for it, and so far my intestines have come up on all the BioSET stuff and of course on Enterolabs. I followed a low carb diet since some time in 2003...made the connection between some of my problems and gluten in 2005, went gluten free, THEN got tested at Enterolabs. By the time I had my endoscope in 2006 I had been on a low carb diet for 3 years, then on a strict gluten-free diet for 5 months. I don't think there was any way possible that they could have found damage at that point unless I had refractory sprue. And, I think the only reason I didn't have the wasting that so many have is because I had been on a low carb diet for so long and I just wasn't getting huge amounts of gluten. Enough to keep me sick but not enough to flatten many villi.

Sounds like I was awake for hours, lol, but actually this all occurred in just a couple of minutes. :lol:

jerseyangel Proficient
jerseyangel
Posted

Donna--

I use Zia products. I also used to use Proactiv--I had it delivered automatically for probebly 7-8 years. It always worked great. About a year and a half or two years ago, it started making my face too dry, so I discontinued it.

I did try Cetaphyl, but didn't have good luck with it. I then used products by MyChelle. They are also very good--and made from very good ingredients. I could only find them at Whole Foods or by ordering.

I found Zia, and tried it (It's easier to find here--I get it at Wegmans)--and have stuck with it for a while now. I use the Moisturizing Cleanser and the Ultimate Night Renewal. Some of their products contain gluten, so you have to read, but their customer service is great, and will help you with that, also. :)

Rachel--

I noticed the name change right away :o Must have been Scott--he's the only one (as far as I know) who can change the title of a thread. Does this mean I have to pack my bags and move on? :(

I have a suggestion for a subtitle: 'When the gluten-free diet isn't enough'.

CarlaB Enthusiast
CarlaB
Posted
I'm not too sure why this is now "The Lyme Disease Thread".....it wasnt my idea....and I dont think its a fitting title. I dont know.....what do you guys think?? Is this the lyme disease thread?? :unsure:

I think a title like OMG I might be onto something: beyond gluten intolerance

CarlaB Enthusiast
CarlaB
Posted
Must have been Scott--he's the only one (as far as I know) who can change the title of a thread. Does this mean I have to pack my bags and move on? :(

I have a suggestion for a subtitle: 'When the gluten-free diet isn't enough'.

I saw Scott on here for a while last night.

I like Patti's suggestion ... I posted before I saw it.

AndreaB Contributor
AndreaB
Posted
I have a suggestion for a subtitle: 'When the gluten-free diet isn't enough'.

That's what I like. I was going to suggest something like that.

When the gluten-free diet isn't enough, a place to discuss all other possibilities.

Patti, you better not move on or I'll have to too. This is practically the only place I'm on anymore. I agree, as far as I know Scott is the only one who can change the title.

Rachel (or anyone else),

Is a test for Candida a blood draw? Do regular doctors do that?

Does regular garlic work for die off or is it just garlic oil?

I have a new friend that thinks she has candida. I told her she may very well have celiac/gluten intolerance. She has problems with wheat, corn and oats. She has cut out fruit for now. She is also doing a little gluten free challenge. She'll reintroduce gluten the beginning of Feb.

Is it possible for young children to have candida? Her oldest two (7 & 4) had surgery after they were born and were put on antibiotics. If I remember correctly they both still have some reflux issues.

Judyin Philly Enthusiast
Judyin Philly
Posted

Patti--I like your title

or

I have a suggestion for a subtitle: 'When the gluten-free diet isn't enough'.

""When the gluten-free diet isn't enough to make us heal.""'.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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