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Lymes And Gluten Intolerance!


Tiff

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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


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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.

 

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    • trents
      The "IgA 47-310 normal range" = is the total IGA test I mentioned in an earlier test. It goes by a number of names. He is not IGA deficient.
    • knitty kitty
      Doctors don't usually test the levels of all the B vitamins.  B12 is frequently the only one checked.   Ask for an Erythrocyte transketolase test to check Thiamine Vitamin B 1  levels.  The eight B vitamins all work together, so they should all be supplemented.  Additional thiamine in the form Benfotiamine can be taken.  
    • knitty kitty
      No.  The damage done to the lining of the intestines is caused by the autoimmune response of Celiac disease.   People who have been off of gluten for an extended period may take longer to mount an autoimmune response.  Twelve days of gluten after two years off probably wasn't enough time and not sufficient gluten.  
    • LizzieF
      @trents @knitty kitty would NCGS show some celiac in biopsy?     
    • LizzieF
      @trents blood tests were IgA 47-310 normal range - mine was 120; TTG <15.0 antibody not detected, mine was <1.0.
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