Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Lymes And Gluten Intolerance!


Tiff

Recommended Posts

Tiff Apprentice

Hello Everyone,

I'm not entirely new to this forum, but I have been trying to figure out my gluten issues. I have all the typical celiac symptoms, however, I was recently diagnosed with Lymes Disease. I tested positive for Band 41 , and now I have started a anitbiotic regiment diagnosed by my LLMD.

Let me start off by saying that I am 30 years old and I've had Hashimotos thyroid disease since the age of 14.

It all started this last Jan. (2009). I woke up one day with horrific diarreha, nausea, pain in stomach, hands that would swell at night, muscle twitches, neck pain, back pain, joint pain (mostly in my wrists and ankles), burning feeling in muscles of arms, tingling in hands and feet, itchy skin, eye floaters, headaches, stool became very light in color, and I had horrible insomnia. And believe me these are not all of the symptoms there are much more. Anyhow, I have been on a journey to find a doctor that would find out what the heck was wrong with me. Along the way I was diagnosed with Severe Vitamin D deficiency (tested a 6). I was put on 50,000 icu of vitamin D once a week for 3 months. My levels are just now back to normal. I am still taking 5,ooo icu of vitamin D3 everyday and I will probably have to do so the rest of my life. I have also been gluten free since June 1, 2009. A gluten free diet has helped, but I still haven't truly felt myself.

I have been through a liver and kidney detox which also didn't seem to help my symptoms very much. This is when I decided to follow through with seeing a LLMD. Throughout my doctor journeys they also tested me for LYMES. I was told I have been exposed to it and that my body would fight it off. And with the minimal research I have done on the internet I know this wasn't true. Therefore, I went ahead and scheduled an appointment with an LLMD. He said that most of his Lymes patients are also gluten intolerant. This can be a sign of Lymes. I'm just wondering if anyone else on this forum has been diagnosed with Lyme?

I would love to chat!

Thanks,

TIFF


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nasalady Contributor
Hello Everyone,

I'm not entirely new to this forum, but I have been trying to figure out my gluten issues. I have all the typical celiac symptoms, however, I was recently diagnosed with Lymes Disease. I tested positive for Band 41 , and now I have started a anitbiotic regiment diagnosed by my LLMD.

Let me start off by saying that I am 30 years old and I've had Hashimotos thyroid disease since the age of 14.

It all started this last Jan. (2009). I woke up one day with horrific diarreha, nausea, pain in stomach, hands that would swell at night, muscle twitches, neck pain, back pain, joint pain (mostly in my wrists and ankles), burning feeling in muscles of arms, tingling in hands and feet, itchy skin, eye floaters, headaches, stool became very light in color, and I had horrible insomnia. And believe me these are not all of the symptoms there are much more. Anyhow, I have been on a journey to find a doctor that would find out what the heck was wrong with me. Along the way I was diagnosed with Severe Vitamin D deficiency (tested a 6). I was put on 50,000 icu of vitamin D once a week for 3 months. My levels are just now back to normal. I am still taking 5,ooo icu of vitamin D3 everyday and I will probably have to do so the rest of my life. I have also been gluten free since June 1, 2009. A gluten free diet has helped, but I still haven't truly felt myself.

I have been through a liver and kidney detox which also didn't seem to help my symptoms very much. This is when I decided to follow through with seeing a LLMD. Throughout my doctor journeys they also tested me for LYMES. I was told I have been exposed to it and that my body would fight it off. And with the minimal research I have done on the internet I know this wasn't true. Therefore, I went ahead and scheduled an appointment with an LLMD. He said that most of his Lymes patients are also gluten intolerant. This can be a sign of Lymes. I'm just wondering if anyone else on this forum has been diagnosed with Lyme?

I would love to chat!

Thanks,

TIFF

Hi Tiff,

First it was smart of you to realize that your body needs help fighting Lyme Disease; you need to be on antibiotics!

I have not been diagnosed with Lyme disease, but you're definitely at the right place. I know of at least two (former) members of this board who were diagnosed with Lyme disease....it's funny, we were just "discussing" this on another thread that I had started about lupus, because Lyme disease can mimic lupus, MS, celiac....well, you name the disease, it seems as though Lyme can mimic it! LOL!

I'm sure that someone who has LD will be happy to chat with you. There must be more of them on this board.

In the meantime, I will say, yes! gluten intolerance can definitely be associated with Lyme Disease, plus all of the other "normal" celiac symptoms as well.

But some of have been wondering if you can have both Lyme disease and celiac disease simultaneously, and I would think probably so....if you want to read the latest post on that thread, follow this link:

https://www.celiac.com/gluten-free/index.ph...st&p=566640

Also, you should know that if you have Hashimoto's, you are much more likely to have celiac disease than the average person. You may be interested in the following medical papers on this topic:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Many of us here have multiple autoimmune and related conditions and it is SO confusing trying to figure out which symptom to attribute to which disease....or maybe even to which of our many medications!! Good luck to you!

JoAnn

Tiff Apprentice

Thank you JoAnn for all of your advice. It's greatly appreciated!!

TIFF :D

Fiddle-Faddle Community Regular

Hi, Wolicki,

I was just wondering if you ever got your blood tests back? I hope you asked for a copy of them. I went to a clone of your (awful) doctor, who did not want to run celiac tests, and he had his assistant call me to tell me everything was fine and normal. Another doctor looked at the test and said, "wait a minute, this says you HAVE it." (Duh.)

So whatever your idiot doctor says the results are, ask the office staff (not him) for a copy.

I did better on Levoxyl than Synthroid for a long time, but for some reason, I seem to do fine on Synthroid. One thing that I think makes a huge difference to how you absorb either one is the gluten-free diet--I suspect the reason that so many do so poorly on Synthroid vs. Armour is that the Armour is so much more easily absorbed, and if you have a celiac-damaged, leaky gut, then you will have trouble absorbing everything--nutrients, vitamins, and Synthroid.

As soon as I went gluten-free, I began absorbing better, and my ever-increasing need for Synthroid finally turned around, and every couple of months for nearly a year, my dosage had to be decreased. (Luckily, I have a good endocrinologist--it was the dermatologist I went to for DH that was the idiot.)

  • 6 years later...
JamesC Newbie

Hi Tiff - did you ever get to the bottom of what was causing your symptoms? Was it Lyme? Did the antibiotics help? 

vickyloveaimee Explorer

I have lyme disease and same as my 5 years old daughter,and recently I just found out she has gluten intorance and possible celiac ( has dq2 gene),I believe lyme will destroy your body and cause lots of food sensitive,so I think the point is we have to treat lyme and repare gut ,maybe when the gut heal one day,we no longer has food issue,unless a truly case of celiac,then still need gluten free forever.

 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

    2. - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

    3. - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

    4. - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

    5. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442

    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
×
×
  • Create New...