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Omg...i Might Be On To Something

Rachel--24

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Mango04 Enthusiast
Mango04
Posted
Pure evil those crackers. ;)

You know what's funny about those crackers? I always Rachel them! Always! I don't normally Rachel things either...but there's something in those crackers....(I don't eat them anymore though, in honor of this thread... :P )

Laura - I'm so glad you went "off" on your doctor!

Evie - Sorry you're not feeling well :(

Julie - Yes, that happens to me (the emotional wreck thing <_<:wacko::wacko: )

Susan - I'm going camping on an island full of wild dingos :blink: Help me not be scared :o:unsure::lol:

Andrea - I hope your dad is okay. My dad got sick recently. He was in the hospital for a few weeks. My family decided not to tell me about it :huh: They said there was nothing I could have done anyway since I was out of the country... Hello...I would have gotten on a plane. He's okay now though. :unsure:

Rachel - Yes, I think in the future you'll be surrounded by health and nightclubs and costumes and dancing (and maybe a few drinks) That's my official prediction.

Rinne - I'm equally enjoying the scientificness and the poetry within the words you post.

Patti - Did I read that you got glutened by nuts? :(

Everyone else - hi :wub: (I'm trying to keep up :) )

I'm keeping quiet these days, but spying on you all when I can :D

Oh - and Happy Halloween :P:D (Is it wrong to say I'm so glad I'm in a country that does not celebrate Halloween or Thanksgiving? In that sense, it's such a celiac-friendly place...)

Bye for now :):)

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

OMG....I'm getting so behind....why is my "add reply" not working??

Sooooo frusterating.

Beverly,

Thats awesome that you're getting all these tests done. I'm a firm believer in taking tests. I dont think I've ever refused a test...no matter how "far off" it seemed. In the last 4 years I took about a million tests and I found out that I'm PERFECTLY healthy....haha. Obviously they werent the *right* tests but at least I know there is nothing like cancer or MS or something like that going on.

Make sure you get the Western Blot IgM and IgG from Igenix....very important!!

Holy heck.....I just remembered something!

I found this a little while ago...apparantly the mainstream Dr.s were trying to shut Igenix down??? My Dr. had told me that the infectious disease specialists never wanna diagnose Lyme and even when they see a positive result (which is rare since they arent using good labs) they *still* ignore the result and tell the patient they dont have Lyme!!

I found that hard to believe...not sure why....I should know better after all I've been through w/ the idiot Dr.'s....the WORST of all being the Infectious Disease Specialist.

OMG Rinne....you're letter was PERFECT...I dont know quite how I'm gonna word mine yet but it WONT be anything nice. I will try to refrain from using the words that first come to mind...it will be a great practice of strength.

Anyways...I got sidetracked....

Check this out....my Dr. wasnt exaggerating at all and apparantly Igenix was scrutinized by the mainstream docs for diagnosing Lyme patients.

Open Original Shared Link

He is an excert from the article...

Many patients are told they don't have Lyme disease and a postive lyme test means negative. The doctors do not want to touch this disease and now laboratories are being scrutinized. Long term antibiotics are considered a death sentence for the use of Lyme disease yet they are used long term for teenagers for acne and other disorders. Lyme patients end up taking medications to alleviate symptoms of muscle and joint pain and other discomforts. Many are told they need to a see a psychiatrist that usually starts a new battery of psychiatric drugs. What about the side effects of these type of drugs? In fact, most psychiatric drugs we do not understand how they work on the brain and what the damage long term may be, yet this is perfectly acceptable.

In the end, the patient suffers enduring worsening symptoms over time. Let me repeat that statement one more time, because nobody seems to hear this: the patient suffers in the end with worsening symptoms. I truly believe this disease can be cured but for some reason we don't want to. The public and social demand as well the economics and political bureaucracy will determine the future of Lyme disease.

dlp252 Apprentice
dlp252
Posted
Yeah, we'll see what happens on Thursday ... I'm skeptical.

Okay, I'll be unskeptical, lol. At least they are willing to use the right lab! I hate to even mention it to ANY of my doctors yet...I mean I've just met these new ones, lol.

CarlaB Enthusiast
CarlaB
Posted
Okay, I'll be unskeptical, lol. At least they are willing to use the right lab! I hate to even mention it to ANY of my doctors yet...I mean I've just met these new ones, lol.

That's what I mean, I am skeptical that they are telling me they'll do whatever I want on the phone, then tell me they can't send it there once I get there on Thursday!! Hopefully, I'll be proven wrong!

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

Mango....WHAT???!! (shocked face emoticon goes here)

There is NO Halloween in Australia??? No Thanksgiving??

I was not aware of this...please tell me there is XMAS.

First I find out people are doing away with Television and now THIS!! Its too much for me in one day! (2 shocked faces go here)

When are you coming back? Its been a few months now right?? Was it 4 months you were gonna be over there or longer??

Camping with wild dingos!! Oh my...make sure to put on *lots* of insect repellant. :)

Yeah...I might be a little paranoid now. (hiding face emoticon)

dlp252 Apprentice
dlp252
Posted
You know what's funny about those crackers? I always Rachel them! Always! I don't normally Rachel things either...but there's something in those crackers....(I don't eat them anymore though, in honor of this thread... :P )

....

Oh - and Happy Halloween :P:D (Is it wrong to say I'm so glad I'm in a country that does not celebrate Halloween or Thanksgiving? In that sense, it's such a celiac-friendly place...)

I was going to try finding those crackers at one time, but after this thread decided against it, lol.

I was just thinking I was wishing I was someplace where they don't celebrate Halloween, lol.

Hey everyone, I am now successfully finished with day 3 of my elimination diet...I've had NO chocolate, sugar, beef, soy...none of the bad stuff! And, what's even better is that I actually haven't WANTED any of it...well, except the beef, lol. I like me some steak. :ph34r: Just shocks me that I haven't craved sugar. I AM eating a small bit of fruit with each meal though, so maybe that's helping. If it comes back that I have candida, I'll cut the fruit down a little more...just wanted to make sure I could stick to this diet for as long as I needed to. Total fruit consumption isn't high though...half an apple for breakfast, a tiny container of applesauce at each of my work "lunches" (that's 2), and a half an apple for dinner.

Had an appointment with the nutritionist today, who wants me to start supplementation. They ordered me some stuff which is supposed to bind with the mercury (pectosol--something to do with the pectin--found a few things about it online after Friday's appointment)...she really wanted me to take it once I told her my next removal was next week. I probably won't get it in time though so I'm going to take vitamin C and that gluth.... stuff until then.

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

Anyone getting tested for Lyme...

Carla....your post reminded me of this.

I recall that if you're blood is going to Igenix you'll want it drawn at the beginning of the week. I think they need to get it there so that it can be tested fairly quickly. I dont remember if it has to be frozen or not but I do recall that it shouldnt be sent toward the end of the week because it shouldnt sit around over the w/end. Proper handling of the blood sample is important. Just wanted to put that out there. My blood was drawn on a Monday and shipped to Igenix that same day.

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dlp252 Apprentice
dlp252
Posted
That's what I mean, I am skeptical that they are telling me they'll do whatever I want on the phone, then tell me they can't send it there once I get there on Thursday!! Hopefully, I'll be proven wrong!

Oooooohhhhh, I see what you mean, lol. Okay, I might be skeptical too!

CarlaB Enthusiast
CarlaB
Posted
Anyone getting tested for Lyme...

Carla....your post reminded me of this.

I recall that if you're blood is going to Igenix you'll want it drawn at the beginning of the week. I think they need to get it there so that it can be tested fairly quickly. I dont remember if it has to be frozen or not but I do recall that it shouldnt be sent toward the end of the week because it shouldnt sit around over the w/end. Proper handling of the blood sample is important. Just wanted to put that out there. My blood was drawn on a Monday and shipped to Igenix that same day.

Thanks for the info. I'll have my husband call the doc again tomorrow. I can't deal with the incompetants who work there LOL. I KNEW they should check with the lab BEFORE my appt!!

dlp252 Apprentice
dlp252
Posted

And re the TV thing...cancelled my cable years ago, finally got just the basic channels ($13/month) a couple of years ago, cuz I get lousy reception here without it.

Rinne - DVD player, lol. Get a portable DVD player, and buy the I Love Lucy TV shows on DVD...then you can watch them anytime you need to.

CarlaB Enthusiast
CarlaB
Posted

You can watch DVD's on most computers. When we were moving I'd watch movies on my laptop when I was alone in the new house with boxes and no TV.

happygirl Collaborator
happygirl
Posted

x

rinne Apprentice
rinne
Posted

From the same article Rachel posted:

We can all breathe a sigh of relief, Igenex labs that specialize in tick-borne disease testing passed certification not only by the state of California, but by the state of New York that put a big blot on the labs Western Blot Lyme disease test prompting for investigation because Igenex purportedly performs inaccurate lyme disease testing. Igenex was put through this scrutiny due to an article that came out in the New York Times on August 2005. The article starts off profiling a patient with disabling pain and exhaustion. Doctors couldn't figure out what was wrong with him and even ruled out Lyme disease until one doctor sent his blood work to Igenex Labs. The controversy started when the results came back from Igenix positive for Lyme disease by the ELISA and Western Blot test. Another doctor got involved in the case from New York and tested the patient's blood numerous time for Lyme with negative results using a different lab and insisted he did not have Lyme disease. Then, the New York State Department of Health started investigation proceedings on Igenex labs located in California.

There is a war between those who say there is Lyme and those who say there isn't and the battleground is territory you have to travel if you want answers. I think it is smart to know and to understand why Igenex is the lab of choice. Thanks for the link.

Mango04 Enthusiast
Mango04
Posted
Mango....WHAT???!! (shocked face emoticon goes here)

There is NO Halloween in Australia??? No Thanksgiving??

I was not aware of this...please tell me there is XMAS.

First I find out people are doing away with Television and now THIS!! Its too much for me in one day! (2 shocked faces go here)

When are you coming back? Its been a few months now right?? Was it 4 months you were gonna be over there or longer??

no Thanksgiving of course hehe (actually no turkey ever generally speaking - except maybe on Christmas). I'll be home just before Christmas though :)

Camping with wild dingos!! Oh my...make sure to put on *lots* of insect repellant. :)

Yeah...I might be a little paranoid now. (hiding face emoticon)

Uh - this was not the right place to post about camping huh? :ph34r: I was so worried about the dingos I wasn't thinking about any other aspect of it. How dumb am I? I've been researching insect repellent though...and yes I will use lots.. :D

Mtndog Collaborator
Mtndog
Posted
I cried, and kept crying, and cried some more. I don't have words to express how mad I was...that I am continuously treated like this. We left and I just wanted to scream. We are no longer going to go to GIs...this is now my umpteenth GI who is an A$$hole. If I go to another doctor, it is going to be an immunologist. I kept crying, and cried some more, and called Eric and cried, and hyperventilated, and cried and wanted to scream. I don't know why, I just don't. I don't know what happened to me that my life is like this.

So then, I calmed down, and we stopped at the mall and went shopping. :lol: Barely any of my clothes fit anymore because I am a whopping 98 lbs (but, remember, this doc sees LOTS of YOUNG WOMEN LIKE ME). So I got a belt to hold my pants up! And a couple other cute things. Came home and napped.

Tomorrow is early morning testing at NIH....for leaky gut and other such things. Sigh. I must say, I'm pretty defeated today. This was by far my worst app't yet.

rachel, thanks for letting us know about igenix/sending in. that is going to be on my list. xoxo

This is OBSCENE. What an arse... I am SO SO SO sorry that you had to go through this. What a jerk! Talk about the god complex. I have to be honest, every male GI I've ever met has been the same way. I now have a FEMALE GI and it has made ALL the difference in the world.

Evie- Sweetie, I had C Diff over the summer and it was miserable. I'm so sorry- I unfortunately feel your pain. Lots of rest, liquids, acidopholus. I hope it gets better soon!

Fiddle faddle- more paryers your way sweetie!

Rachel- Thank you for the reminder about Igenix and doing it early in the week.

rinne- regarding what you just said, one of my closest friends from childhood is an MD (dermatologist) who I was speaking with the other day and she said she believes that there are TONS of people walking around with undiagnosed Lyme. She's pretty conservative too in terms of things like that- took her awhile to accept my celiac without a positive biopsy. So if SHE was willing to say that...... :blink:

DingoGirl Enthusiast
DingoGirl
Posted

Way premature posting but I got stopped in my tracks....

MANGO IS GOING CAMPING WITH REAL DINGOS!!!! :rolleyes::lol:

Meredith....don't worry. Dingos are gentle, and very quiet, known to jump trees....I can't think what else. they won't bother you. I am so jealous, I think they are so beautiful, you will note that I have a propensity for dingo-ish yellow dogs w/ big ears.

My Annie jumped in a tree the other day. :):blink:

p.s. there are nuggets w/ almonds waiting for me at my brother's house. :ph34r: They have been instructed to give me only 8. Or 10. I forgot. But I will lie to them and say it was more. :lol:

Judyin Philly Enthusiast
Judyin Philly
Posted

lAURA..

I HAVE NO WORDS...ONLY FURRY!!

IT'S JUST NOT FAIR.. :ph34r:

I WILL PRAY AND PRAY AND PRAY SOMEMORE...

YOU JUST DON'T DESERVE THIS TREATMENT.

GLAD YOU TOLD THE *&(_&^%&i)_ A** h** OFF BIG TIME.

WHAT A FLAMING JERK

JUDY

DingoGirl Enthusiast
DingoGirl
Posted

Oh Laura..... :(:angry: I just read your post. I am so sorry, and SO GLAD you told him off. He gives all doctors a bad name.....I would write a letter to someone very important.......AMA maybe? I don't know...

I haven't read everything else but must go. will catch up later.

Mtndog Collaborator
Mtndog
Posted
Carla - I was in constant stress also in my family. It was a crazy place...an emotionally impoverished and disparate battleground, yet appeared quite normal and upright to the outside world....we all (the four kids) came out with ISSUES, one brother took his own life and I have spent at least 50 percent of my own life contemplating same.

This stress can only do harm to the body, and it's a constant battle to work to regain and undo those stressors for us.....all we can do is fight and try and try some more....some days it seems one step forward, two steps back....I would definitely look into Lyme in your case. But I do think gluten-intolerance causes the propensity to react or be affected mentally/emotionally in a more acute manner, DEFNITELY. and I know this because having removed it, I am no longer in a constant sad and confused fog. In college I also dropped down to six units a couple of semesters and could hardly get out of bed. It took almost six years to graduate and I was so proud to have done it.

DingoGirl- Damn, I just read this. I knew that you had a lot going on but I didn't realize the extent. Just a cyber hug. Wish I could do more. You SHOULD BE PROUD that you graduated (hey 6 years is normal in california :P I went to SDSU for a semester and they all were on the 6 year plan) :P . It doesn't matter how long it took- just that you got up every morning and made an effort in itself is something to be damn proud of!

I agree- chronic stress has incredible effects on the body.

oh, Andrea - - PLEASE schedule a visit to see your dad....when my dad was dying (colon cancer at 56 years old), a nurse looked at him on a Saturday morning, said, his vitals are good, he may have 3 weeks (we were waiting for my brother to fly in a few days later). He planned his funeral that day, the director came to our house. Later that afternoon we prayed together, he asked some questions about God and forgiveness.....it was one of the most beautiful days of my life, the things he said, the look on his face, and the epiphanic moment he had about how God viewed him. He died an hour later, cardiac arrest. I look forward to seeing him when it's my time to go.

Dang, this got all serious all of a sudden...... :huh:

hugs and love..... :)

Andrea- I agree. The fact that I was able to be with my om means so much to me now. I'm sorry that this is happening.

Sad Beverly :(

I'm all weepy and mopey and scared tonight. But the cute little trick or treaters cheered me up a bit. I haven't lived in a place that had trick or treaters in over 8 years. It was so fun! We even had a little guy dressed as Nemo. I LOVE halloween (confession: I ate a Reese's peanut butter cup :rolleyes: )

WHAT A FLAMING JERK

JUDY

OMG I love this. From now on people who make me mad will be called FLAMING JERKS!

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Laura,

UNBELIEVABLE!!!!!!!

:angry::angry::angry::angry::angry::angry:

I'm beyond words. :angry:

rinne Apprentice
rinne
Posted

Not so Happy Girl :( I am so sorry to hear how wretched he made you feel. I wish you could see my doctor or Rachel's or any doctor who would listen and respect you. I suspect we have all had similar experiences which doesn't make it any easier but at least you know you are not alone in all of this. Sending you hugs.

miamia Rookie
miamia
Posted
Yes, he most certainly gets the flaming jerk award. I wish I could've videotaped this so you could have seen how awful this was. I've had bad experiences...and then I've had this. This took the cake.

I am in the process of writing my doc at JH a request to consult with an eos. specialist I found at JH in another department. I'm also attaching an article about eos in a respected journal that this specialist was an editor for. Then I'm writing this specialist and telling him to call my doctor. So hopefully one of them will take the hint and contact each other.

I am so disgusted with the medical community right now. DISGUSTED. Luckily I had my mom with me ... she told me, we will find someone who can help you. We just haven't found that person yet. But we will. And I have to trust that. God says he will never forsake you....and I have to believe that. My body has forsaken me though---who do I talk to about that? :)

I miss Eric---I wished he could've been here today. I never knew I could miss someone that much (and we were long distance throughout college/grad school until I was married! so I understand "Missing someone"....but this is an entirely different story.)....its like I miss him from inside the deepest parts of my soul.

So something interesting....I had a terrifying dream the other night. Talk about Freudian interpretations. So it took place in my new house (which, I've mentioned, is the house I lived in, twice, as a child, and many of the neighbors are the same neighbors from when I was a little girl). The house across the street (friends of mine) caught on fire. Actually, it started in the backyard. They weren't really worried, came over to my house, and we started calling 911. Couldn't get through...it was like 911 didn't work. Kept calling other numbers, but couldn't ever find the right number (like, I'd get the fire department, but for another area, like in Williamsburg or something). Well no one at our house seemed concerned....and the fire slowly started spreading..grew in the backyard, and then started on the house. At one point, we heard sirens, but the firetruck never came. The neighbors are all at my house and no one is really worried that the house is on fire. I am the only one who is worried. (this was the longest dream of my life, by the way). the house keeps burning, and i feel so guilty, because I can't get anyone here to help put the fire out, but yet, I'm the only person who seems to care that no one is helping and the fire is spreading. I am frantic. By now, the whole house has burned down. It was so awful, because it started off as a small, tiny fire in the very backyard....and slowly spread and consumed the whole house. but no one noticed it was 'that bad' and they just assumed someone was coming to save them. I end up feeling guilty because I couldn't get the help.

So I told my mother this......and we are both psychologists (she is ABD in psy) ....... and we both go, if this isn't a classic example of Freudian psychology, then I don't know what is! Talk about a metaphor for my life and health saga.....

except the house burned down :(

Laura-

I ma so sorry to hear about tis experience- DOCTORS!!!I have no words

I sent you a pm

Miamia

Guest melannen
Guest melannen
Posted

Laura -

So sorry about the flaming jerk (love the term judy!). Your mum's right, you WILL find someone who can help you...you're "house" won't burn down :wub:

CarlaB Enthusiast
CarlaB
Posted
...you're "house" won't burn down :wub:

No, it won't, it's the world around you falling apart and no one cares ... not you. If you were falling apart, it would have been your house.

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    • trents
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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