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Symptoms ruining my life for 1+ year

newkidontheblock
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newkidontheblock Newbie
newkidontheblock
Posted

Hello everyone and thanks for taking the time to read this. I will keep it as short and simple as possible. I'm a very active person (28 year old male), always have been and never had any type of physical issues. About 18 months ago, I started getting a tightness/popping sensation in my chest/neck area. It has never full gone away, but comes and goes often. About 12 months ago, I was having some wrist/forearm pain and diagnosed with "wrist tendinitis" in both wrists from a specialist. I figured I was just overdoing it with my hands. A couple months later, started having knee pain in both knees and got diagnosed with "knee tendinitis". This was unusual, because I am never very excessive on my legs, and have never had knees problems before in my life. A couple months after these issues (which still hadn't resolved with physical therapy, I started developing muscle twitches/fasculations that spread to pretty much my entire body. They occur mostly in all my limbs (constantly in calves) and have not stopped for almost 6 months. I feel a "buzzing" sensation in my calves as well sometimes. On top of all this, I have random acute aches and pains throughout my body, coming and going as the weeks pass. Also I feel very stiff, even after stretching a lot, and my joints crack/pop a lot. They have been done this before all these issues started happening.  It feels like my body will get easily inflammed with such a little amount of exercise. 

 

I have gotten tested for literally almost anything you can think of. All tests and nutritional panels come back normal. I have even been taking a ridiculous amount of supplements/vitamins to try and cure these symptoms, to not much avail. I've been tested for all sorts of dieases (except celiac) because the rheumotologist said if I don't get rashes I wouldn't need that test. The only test I came back positive for was lyme disease/babesia. I thought this was the answer to all my issues. Well.... 3 months after antibiotics, most the symptoms have NOT resolved. I have been on a mostly gluten free diet for the past 2 months. 

 

What I am very curious about though is, I did just have a food allergy test done and I have high food allergies/sensitivites for almonds, all other nuts, diary, & wheat/gluten. As I said, I've cut out gluten for the most part the past couple months and have not seen a significant change in symptoms. I'm not sure if it takes longer to see results. But I have been eating almond butter and drinking almond milk every single day for the past 1-2 years. Instead of a gluten intolerance causing all these neurological symptoms, could almonds have been causing all these symptoms? Creating some type of mass inflammation which has affected my muscles? 

 

I just don't know where else to turn to, after a year of searching and spending $10,000 out of pocket, I have almost no answers besides whatever I have isn't deadly and it doesn't seem to be progressing beyond the symptoms i've listed. If you have any other specific questions I need to address just let me know, and thanks for your time. 

 

I have been to a neurologist and rhumeatologist by the way, who could not find anything wrong. 

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GFinDC Veteran
GFinDC
Posted

Hi Newkid,

Welcome to the forum! :)

Lyme disease is not an easy thing to eliminate.  Your symptoms could be from lyme disease still.  I'd follow up on that and see if it is still present.

Celiac disease is not an allergy, so it doesn't show up on allergy tests. However it does involve the immune system so it may cause heightened immune responses (allergies) as the immune system is overstimulated.

Testing for celiac disease doesn't give accurate results unless you are eating gluten for a period of time before testing.  Celiac testing checks for an immune response by IgA and IgG antibodies to gliaden, a protein in wheat.

Being mostly gluten-free for a couple months is not good enough to get relief.  The immune system reacts to very small amounts of gluten.  So even a crumb is enough to cause problems.  Also getting over celiac damage can take a year or more.  The immune system doesn't stop reacting a few hours after you stop eating gluten.  It can take months to calm down.

Betsy Bee Newbie
Betsy Bee
Posted

Sounds like you have a lot of food sensitivities causing celiac-type changes to your guts making it hard for you to absorb nutrients. Have you tried taking glucosamine and chondroitin for joint support? A good calcium and magnesium supplement might help support your muscle twitches if it is a nutrient deficiency. Also selenium is good for stiff muscles as well. If you can give your muscles a rest every other day that might help you heal too.

Did you go gluten free without a doctor's diagnosis? It's best to get a diagnosis first so you don't end up doing a gluten challenge later. Show your M.D. your gluten tests so they can refer you to a gastroenterologist and check you for celiac disease. Cyrex Labs Array #3 can check for tTg-6 levels to your brain if you think you have a neurological form of gluten intolerance / celiac. 

newkidontheblock Newbie
newkidontheblock
Posted
  • Author
1 hour ago, Betsy Bee said:

Sounds like you have a lot of food sensitivities causing celiac-type changes to your guts making it hard for you to absorb nutrients. Have you tried taking glucosamine and chondroitin for joint support? A good calcium and magnesium supplement might help support your muscle twitches if it is a nutrient deficiency. Also selenium is good for stiff muscles as well. If you can give your muscles a rest every other day that might help you heal too.

Did you go gluten free without a doctor's diagnosis? It's best to get a diagnosis first so you don't end up doing a gluten challenge later. Show your M.D. your gluten tests so they can refer you to a gastroenterologist and check you for celiac disease. Cyrex Labs Array #3 can check for tTg-6 levels to your brain if you think you have a neurological form of gluten intolerance / celiac. 

The ND that diagnosed me with Lyme told me to stop eating gluten. The strange thing is, I did a gluten sensitivity test a few months ago and it came back negative. As in , I had absolutely no gluten allergy. But in this food allergy panel that just came back, gluten was a “high” food allergy for me. Doesn’t make any sense. 
 

im not convinced I have Lyme disease. Or atleast, these symptoms are from Lyme. From my extensive research, almost everyone could have Lyme disease. Most people don’t show symptoms though but you can still come up positive on a test. I did antibiotics for 3 months and did not feel any different the entire time. Didn’t feel worse or better. They even switched the antibiotics for month 3 and still felt no changes. 

Ennis-TX Grand Master
Ennis-TX
Posted

The muscle issues sound a bit similar to mine, look up magnesium deficiency, and gluten ataxia and see if those ring any bells. The testing for deficiencies is a base line, issue is they test for bare minimum you need. A active person will deplete magnesium stores MUCH faster and needing to supplement is normally a must. Celiac, has hundreds of symptoms and being autoimmune can effect everyone differently.

Celiac is not a allergy or sensitivity and will not show up in such testing. You need a celiac specific testing and you doc is obviously a bit ignorant to it. He said if you do not have a rash your not celiac but the DH rash only appears in some people. I would suggest doing a gluten challenge and getting proper testing done, 12 weeks 1-2 slices of bread a day for the antibodies to show up at a high enough level for detection in the blood. 2 weeks for the damage to be seen under a microscope in the intestinal biopsy via endoscope.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

cyclinglady Grand Master
cyclinglady
Posted

I think you need to research celiac disease a bit more.  For example, there is no allergy (IgE immunological reaction) to gluten, but there is to wheat.  Celiac disease is an autoimmune disorder like MS or lupus.   Consuming gluten from wheat, barley and rye triggers antibodies. It is possible to have both celiac disease and a wheat allergy.  

Allergy testing is “iffy” at best.  Research that as well.  

You do have to be on gluten for 8 to 12 weeks before they can check antibodies.  

Since your issues deal with tendons, have you ever taken a fluoroquinolone?  It is an antibiotic that contains a black box warning (required by the FDA) disclosing tendon damage.  Damage so severe it has taken athletes.  

This link explains it well:

https://www.webmd.com/cold-and-flu/fluoroquinolones-safety-risks

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