Jump to content

  • Welcome to Celiac.com!

    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):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lymes And Gluten Intolerance!

Tiff

By Tiff
in Related Issues & Disorders

Recommended Posts

Tiff Apprentice
Tiff
Posted

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
nasalady
Posted
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
Tiff
Posted
  • Author

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

TIFF :D

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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
JamesC
Posted

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

vickyloveaimee Explorer
vickyloveaimee
Posted

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.

Go to topic listing

  • 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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.