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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
I wanted to encourage all of you to send out that petition to friends to be signed. Even those who don't have Lyme are certainly at risk and would want treatment available.

I would like to encourage this as well.....I'm having everyone I know sign it.


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AndreaB Contributor
Andrea, Chloe tested positive with Enterolab. We are going to be doing a gluten challenge with her over Christmas break. We had not seen the improvement with her that we had expected to see, so now that she's been gluten-free for a few months, it's a good time to challenge it. She never had the biopsy.

I may have confused you because sometimes I say celiac instead of gluten intolerance, which is more accurate for Chloe and I.

Ok, I can see why you would think she is most likely to have lyme. It is a definate possibility. She sounds like she feels like my daughter about blood draws.

Are you thinking of getting her tested?

My family all had low numbers with enterolab but we all have at least one celiac gene so we will remain gluten free.

Rachel--24 Collaborator
by the way, how long did it take everyone's results to come in?

Two weeks for me but the lab is right by my Dr.'s office....it might have made things a little quicker.

CarlaB Enthusiast

I'm going to wait and see what the doc in NY says. With Chloe's learning disabilities, which aren't easy to pin down, I'm thinking she might have Lyme brain. I thought she had gluten brain, but it didn't make a difference.

Morgan is sensitive to gluten, it makes her have seasonal allergies. Maybe it's not a true intolerance, but just something complicated enough for a person to handle that it pushes her over the edge with the allergies. I don't know ... maybe she has Lyme, too. Actually, they all could, except for Jack, who was adopted.

Rachel--24 Collaborator

Carla,

It would be smart to get the kids tested. The LLMD should be able to tell you how to proceed. I think they could all have it if you had Lyme during all of your pregnancies. I think eventually something could tip the scales and one of the kids could start developing symptoms. It sucks to think about it....but at least you will know what it is and how to deal with it...if something like this ever happened.

I'm curious about what the LLMD will say about this.

AndreaB Contributor
I'm curious about what the LLMD will say about this.

Me too.

nikki-uk Enthusiast

..signed the petition :)

CARLA!!! OMG another member of the Lyme clan??? :o

I'm glad you finally have an answer..but ,gosh, how long doyou think you've had it??

...and the kids need testing?? :unsure:


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Green12 Enthusiast

Just flying through:

Carla, omg!!! Congratulations on the diagnosis, I am thrilled for you. You finally have answers to what you have been fighting with all these years, what validation! Now you can start your journey to getting better!

Rachel, I really can't thank you enough for posting about getting your body temp up and keeping warm. My temp always bottoms out, but sometimes I forget about it, your posts reminded me to be conscious of that and to take measures to get my temps up and stay warm :D:D:D

Andrea, sorry about Seth and the bump on his head :( Hope it gets better soon.

I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Hope everyone has a great day!!!

:wub:

happygirl Collaborator

x

AndreaB Contributor
I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Looking forward to an update tomorrow. :D

CarlaB Enthusiast

I had the complete Lyme panel done ... don't remember the number.

I'm wondering about the kids, too. Someone asked how long ... I believe since 1972-1975 -- it fits with the onset of the symptoms and the exposure to massive quantities of ticks. So, I would have had it before any of my pregnancies. I am curious what the doc would say because if antibiotics cannot get rid of all the bacteria and if they are not having symptoms, it doesn't seem that they would need treatment at this time, but it's a good thing to know for the future. I think Chloe will probably need treatment ... I'm betting her learning disability -- which is something they can't really pinpoint -- is probably Lyme brain. If her brain works half as bad as mine, I can see why she's having problems. Good thing I started out smart! :P

happygirl Collaborator

andrea...don't you worry, I will DEFINITELY get my hands on the report!

carla...you prob also had the 6050 Open Original Shared Link

CarlaB Enthusiast
carla...you prob also had the 6050 Open Original Shared Link

Yes, that's it.

That would be nice, if you knew before Christmas. IGeneX sent me a paper saying they got it on the 16th, then it was done on the 30th, so after exactly two weeks, have your doctor call and ask them to fax the results.

Lymetoo Contributor
I had my appt with my doc today....um....yeah........ ;) He was old, disorganized, slow, confused.....I was there for SIX HOURS including 30 min to fill out paperwork, 1 hour to wait (appt was at 1030, i wasn't seen til like 1140), then took over 2 hours for them to figure out what bloodwork and tests were needed and then took 10 vials of blood, have to back in later this week to pick up more tests and go back next week for more blood, and then they couldn't figure out the billing. It was like the never ending day from HELL!

Was this your LLMD??? :blink: Could you PM me your location?

dlp252 Apprentice

Okay so I haven't had time to go back and read...someone please keep cliff notes for me for when I get home!!! Please...I'm on my friends dollar, so can't spend a lot of time here...but from what I scanned on this page CARLA HAS A DIAGNOSIS!!??!!! Wow!!! Incredible. Speechless!

Just logged on to say greetings from Costa Rica...actually we set sail a while ago, so we're back in the Caribbean sea somewhere on our way to Grand Cayman. We went through the Panama Canal (partial) yesterday...it was great!

Okay, gotta go. Miss you girls and guys!

dlp252 Apprentice
OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right? :unsure:

Okay so I'm randomly scanning pages here and there for a few more minutes, lol, and came across this. Patti, thanks for caring!!! They are being SOOOOOO very diligent on board about this very tbing. All passengers have to use a hand sanitizer BEFORE coming on board, BEFORE entering the restaurants and buffet and just about every other public place. This is the strictest I've ever seen it--wasn't like this on my other two cruises, but this time they follow people and MAKE them use it, lol. My friend and I are pretty diligent about using sanitizing wipes anyway, but I'm happy to see this.

AndreaB Contributor

Donna,

So glad you are safe and having a good time. :D

Can't wait until you get home, but it sure is nice of you to drop in. :)

happygirl Collaborator

Aw, Donna, I am happy you are having such a great time!!!!!!!

Rachel--24 Collaborator

I'm back from Bioset. My appt. went well....it was a much longer appt. because she had to retest everything.

I have alot to share but I'm WAY tired right now. I think I might go to bed soon. -_-

happygirl Collaborator

Rachel, I'm happy to hear your app't went well! I am sure you are exhausted!!!!!! Get some rest...we'll be here when you post ;)

happygirl Collaborator

x

AndreaB Contributor

Rachel,

We'll be waiting for your post when you are rested and able to post about it.

:wub:

happygirl Collaborator

x

CarlaB Enthusiast

-

happygirl Collaborator

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    • trents
      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
      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
      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
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    • trents
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