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Posted 07 October 2009 - 06:59 PM
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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Lymes And Gluten Intolerance!
Anyone else with this problem?
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#2
nasalady 
- Advanced Community Member
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- Group: Advanced Members
- Posts: 445
- Joined: 19-July 08
Posted 07 October 2009 - 08:15 PM
Tiff, on Oct 7 2009, 07:59 PM, said:
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
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:
http://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:
http://spider.ipac.c..._cd_thyroid.pdf
http://spider.ipac.caltech.edu/staff/joann...imoto's.pdf
http://spider.ipac.c...s/volta2001.pdf
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
Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.
Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.
Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.
Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.
Gluten free since 25 Nov 2008
Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.
Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.
Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.
Gluten free since 25 Nov 2008
#4
Fiddle-Faddle
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Posted 09 October 2009 - 04:12 AM
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.)
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.)
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