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Lyme Disease and Celiac Disease

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Posted 1/29/2015 1:45 PM (GMT -5)
Hi I am new here and was just diagnosed with Lyme Disease, I tested positive. I have Celiac Disease, also tested positive by biopsy. My Concern is how and if anyone else on here has both and if so what treatment works best? I only have two foot of small intestine left so I really need to be careful.
Thank you,
Tammy
Posted 1/29/2015 2:50 PM (GMT -5)
Hi Tammy,
Welcome to our community!!

I'm so very sorry to hear of your situation! I would say that you are going to most likely have to get a LLMD that is knowledgeable of both conditions. I would guess that you most likely will have to use either an IV or a PICC line or injections for your abx to beat this infection.

You will still need to detox though, and we have great ideas for that, plus a whole lot more information in our "New to Lyme? Start here!" thread - so please do take the time to read through it.

Do you have a LLMD yet? If not we can likely help you find one!! Just let us know.
Posted 1/29/2015 3:02 PM (GMT -5)
Hi Traveler,
I know I have a difficult case, yes any links you have would be great. Right now I don't feel so good about my survival chances. I have a doctor that I am going to see next week that was highly recommended for treating Lyme, but I am not sure he understands Celiac. I have been on a GF diet for 4 years now. I also do very little sweets and I am lactose intolerant. Yes anything links you can provide to help me would be great.
Posted 1/29/2015 3:38 PM (GMT -5)
I would greatly suggest that you find out if the doctor follows IDSA (Infectious Disease Society of America) guidelines or if they follow ILADS (International Lyme and Associated Diseases Society) guidelines for treating these infections. Believe me, you surely don't want to mess with ID docs! They believe that Lyme is hard to catch, easy to treat and won't treat long enough to actually heal the patient!

If the doc that you are about to go see does follow IDSA guidelines, but you don't feel that they understands Celiac's like they should, send me an email with your area and state and I'll send you the contact information for more LLMD's in your area that you can check into. But considering that having Lyme can bring on Celiac, you should be okay - just no oral abx.

I would also greatly encourage you to not eat any sweets - you surely don't want to end up with candida on top of the rest of the things that you have to deal with! You can use sweeteners like stevia or xylitol without fear of it encouraging candida.

You can find the "New to Lyme?" thread at the top of the forum. It has all the great information about detoxing, probiotics and much, much more information. And I would encourage you greatly to start detoxing right away.

If you have a specific request for some information that you would like links for, I'd be happy to see if I can find some, but to just start posting links to everything we have to usually cover with Lyme would take forever and completely overwhelm both of us I think!!

And you will survive this!! You just have a lot of work ahead of you, but that isn't because of the Celiac's, it's because anyone with Lyme has a lot of work ahead of them!! This is a very complex infection that can be a bear to treat! But we have a lot of successes too!! I'm about to have healed from my second go round with Lyme!
Posted 1/29/2015 4:31 PM (GMT -5)
Traveler,
I read your story wow.

I can tell you Lyme does not lead to Celiac, If you have true Celiac disease it is a gene in your blood line and can only be found by a biopsy of your small intestine, it took doctor 51 years to find it. I have been studying it for 5 years now.

I believe Lyme Disease can lead to Gluten intolerance's, however you are not a Celiac unless you have the Gene. :) I wish I didn't have it but I do. It is born in you. It to as Lyme is an auto-immune disease. That lead to killing my Thyroid I have Hypothyroid and I am on Armour, I refuse to take Syn-thyroid because it has gluten in it.

Over the course of the last 10 years, my intestine ruptured and I had to have 22 foot of Ischemic intestine removed. So I am one sick puppy. :( Doctor's in my area are poor, and miss-diagnosed me for years.

I am thinking I got Lyme through a blood transfusion from my rupture because I needed blood and I am O- which is a rare blood type. No one in my family could give me blood. My mother was to old, my sisters refused, and my daughter had just donated blood 3 days before my intestine ruptured, so the only choice they had was to give me what they had in the blood bank. Back then they didn't test for Lyme.

I only use Stevia sweetener and never usually eat any sweets what so ever.

Right now my family doctor (at my demand) started me on Doxyclcine 100 mg 2 times a day, because he was the idiot who kept call me a crazy women for years now. So once I was tested positive for Lyme I took the results to him and now he is so sorry. To late right.

I live in Sinking Spring PA, I am not sure what your email address is Traveler can you send that to me? Also, what is ID doctor?

The doctor I am seeing next week has been known for treating people with Lyme's and had great results. He takes insurance which is what I need, as I spent over 20,000 with doctors that had no clue what they were doing and hubby and I are broke.

I am a little nervous with my Celiac since I only have about 2 foot for absorption left. i am not tolerating the Doxy very well. I am only 90 lbs.

I am on RAW Probiotics and 85 billion cultures for women, I supplement my Iron, vit b12, vit d3, selenium, k-2, vit c (asboric), Magnesium Citrate and I take B12 shots.

I would greatly any advice you have for a LLMD or ILADS doctor in my area,

I am so very grateful for this site and your advice.
Tammy

Post Edited By Moderator (Traveler) : 1/29/2015 2:39:24 PM (GMT-7)

Posted 1/29/2015 4:53 PM (GMT -5)
I edited your post to remove your email address. This is an open forum, which means that anyone with computer access can read these posts (although you have to be a member to post). You surely don't need a bunch of spam!!! I'll be emailing you shortly.

I'm so very sorry, please accept my apologies - I should have been more clear, Lyme can cause a "Celiac-type" of condition in some people.

And I'm so very sorry for your circumstances that almost certainly lead to you having Lyme. What a predicament!

Wow, you surely are in a bad position with your intestines! I have a lot of issues with mine, but I still have all of it. I would assume that you have absorption issues as well with so little intestine left. I would very much encourage you to use only IV, PICC or abx injections for your treatments for Lyme.

And it's no wonder you aren't tolerating the Doxy well with so little intestine to help you absorb it! Try eating just before you take the Doxy. At 200 mgs a day, you are not killing any of the bacteria, but you are stopping them from replicating, which is still pretty important until you can get in to see a good LLMD.

I can't even imagine 90 lbs. At 98 I was a sack of bones - you could literally see every bone in my body without trying.

An ID doc is an Infectious Disease Doctor. While there are a few (very few) that have gone through the ILADS training and treat according to the ILADS standards, most do not and are actually endangering patients. And there's no reason for you to waste more money going to an ID doc that isn't trained properly to treat these infections.

I will email you, but for future reference, to email someone on this site, you just click on the blue envelope under their screen name or on their screen name. This will bring up your email program (once you register your email on your profile) and you can send an email to that person. If the little envelope isn't blue, then that person hasn't listed their email yet. If you have trouble with this, just let me or one of the other Mods know and we can walk you through it. Just be sure to click the "submit" button at the bottom of the page any time you change anything in your profile.

I'll include a bit more information in the email, but more than anything - keep posting and asking questions!! Knowledge is definitely power with these infections and we are here to help all we can.
Posted 1/29/2015 5:47 PM (GMT -5)
Lyme is known to trigger or activate Celiac in those with the gene.
Posted 1/29/2015 7:00 PM (GMT -5)
yes, Razzle - not everyone with the gene has active celiac disease. My son has it...undiagnosed until he was 14 years old ....but symptoms/signs since he was about 5. I think that was my first experience with incompetence/runaround with Doctors.
He either got the gene from my husband or I.
We were both tested for antibodies (we don't have symptoms) - and both of us were negative.

But - one of us does have the gene.

My son had pyloric stenosis at 5 weeks old, and I've read intestinal surgery can trigger the Celiac disease.

We never had a biopsy done...as he agreed to be life-long gluten-free, and get blood work done every 6 months. So, we don't know for sure how bad his intestinal health got...before diagnosed. He wasn't absorbing iron, so we know there was damage. So, in addition to getting the antibodies tested, he gets his Ferritin (sp?) test.

Sorry for the ramble.
Posted 1/31/2015 5:16 AM (GMT -5)
Thank you achievinggrace for removing my email and letting me know about ID doctors. That is where my family doctor wanted to send me too, but I found Dr. Frank N. from my Lyme Advocate. Robin P. She is wonderful. I will be seeing him next week. Thank you Traveler. I sent you an email in response to your email. :) I am so grateful for this site. Thank you all for allowing me in here. I fear I don't have enough intestine and my weight I will not survive. confused
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