Suspected gluten intolerance - minor GI issues but major musculoskeletal symptoms?

[molly1989]

I'm a 28 year old female who has battled a mystery illness for 8 months now.

It started with a trip to South America last November, when I was in perfect health. I spent 8 days there, and on the last day both my traveling companion and I got what we thought was traveler's diarrhea. It only lasted a day or so for both of us, but mine was more severe and upon returning home I was prescribed cipro. I took two pills and broke out in hives. Stopped the cipro, was put on prednisone to treat the rash. Needed a full ten days before rash cleared up completely.

I started to feel unwell about two weeks later. I was losing weight despite eating normally, having anxiety attacks, loose bowel movements and weird tingling sensations in my back. Within another few weeks I developed cracking joints and joint pain. After that came weak muscles, tight tendons, constant muscle spasms, stabbing pains in or near joints, widespread body pain, tender to touch, swollen lymph nodes and continuing loose bowels. I don't recall any stomach pain. It progressed over the course of a month until I couldn't take the pain anymore and was admitted to a hospital. They diagnosed me with reactive arthritis in response to whatever bacteria I caught in South America. They wanted to put me on steroids, but I refused, since at the time I believed I had cipro poisoning and felt steroids would make it worse.

When I got out of the hospital I was still too weak/in too much pain to work. Spent a month at home, where I cut out gluten (not entirely though - I wasn't strict about checking supplements, added ingredients,etc.) I took a lot of vitamins including magnesium and a b-complex, and slowly I got better. 

I returned to work and ate mostly gluten-free - maybe a cookie or some pretzels once or twice a week. I did not experience immediate pain after eating gluten, and certainly no stomach issues. But gradually pain returned, first in my lower and then upper back. The joint cracking came back, then the tendon pain. I also took a 7 day course of doxycyline for an infection (seems like I've always got some infection or another since I first got sick) and ate quite a bit of gluten, and within a few days was back to the excruciating pain. The loose stools came back and for the first time I experienced stomach cramping, shooting pains around my navel, and very tight stomach muscles/bloating.

I got serious and cut out ALL gluten 8 days ago. Upped my magnesium and b-complex, ate clean. I'm starting to feel much, much better. Pain is going away, digestion is returning to normal, and most importantly I feel like my body is absorbing food again (when I'm sick it feels like food just passes through me.) I am now wondering if all of my symptoms could be related to a gluten sensitivity. I do have some doubts, though:

- I don't seem to experience pain or stomach issues immediately after gluten. I have on occasion, but usually it seems to be a delayed reaction, sometimes days later, and depends on how much I ingested.

-My symptoms are largely in my muscles and tendons, not my stomach.

-Still not totally counting out the cipro poisoning theory, especially considering the wide-spread tendon pain.

- Could a bacterial infection trigger a gluten intolerance? Seems weird to me.

- I've only been entirely gluten-free for a week. Could these amazing results happen after only a week gluten-free?

I would love to hear if anyone has experienced something similar to me, or any thoughts. Thank you!

[tessa25]

If I were you I would get back on gluten and get the full celiac blood test done. It includes TTG IGA and IGG, DGP IGA and IGG, EMA, and IGA. You need to be consuming gluten for a negative to be valid. It only takes one positive result to get a gastroenterologist to do the endoscopy/biopsies. You have to be on gluten for all of it.

A delay from gluten to symptoms is normal. A trigger event starting it all is also normal. I had week tendons at diagnosis

 

 

 

 

 

 

 

[squirmingitch]

2 hours ago, tessa25 said:

If I were you I would get back on gluten and get the full celiac blood test done. It includes TTG IGA and IGG, DGP IGA and IGG, EMA, and IGA. You need to be consuming gluten for a negative to be valid. It only takes one positive result to get a gastroenterologist to do the endoscopy/biopsies. You have to be on gluten for all of it.

A delay from gluten to symptoms is normal. A trigger event starting it all is also normal. I had week tendons at diagnosis

 

 

 

 

 

 

 

I think Tessa meant to say:

You need to be consuming gluten for a TEST to be valid, not for a negative to be valid.

 

I agree with what she said. You should go get the blood testing. But don't think that you can go tomorrow & do it because you've "only" been off gluten a week. That week off gluten could give you a false negative! You don't have to eat a ton of gluten, a cracker or 1/2 slice of bread each day will do it.

I rarely had stomach pain & that only in the latter stages before dx. I had major muscle/tendon/bone pain. There are some 200 symptoms that can be associated with celiac disease.

[Posterboy]

molly1989,

While stress is common before a celiac disease I would suspect (without other triggers) that these symptom's came on a little quick for my liking.

What you are describing sounds very much like you picked up a mosquito born virus. 

Chikungunya or Chik-V as it is often shortened too has very intense arthritis described as one of it's notable symptom's.

I would look back at your time line and see if there Mosquito born virus outbreaks in the country you visited.

 A blood test should confirm you if you have developed a mosquito born disease.

As for the link between are gut biome and Celiac disease or other disease there is a stronger link than we might think.

Here is recent research that indicates how an otherwise harmless virus can (could) trigger celiac disease.

Open Original Shared Link

And this very recent research that indicates eating fermented foods early on like sauerkraut and kimchi helps protect against sepsis in the developing world.

Open Original Shared Link

And there is this little older research that notes a distinct biome in gluten free people who still have trouble on a gluten free diet.

https://www.celiac.com/articles/23879/1/Gut-Bacteria-Differs-in-Gluten-free-Celiac-Patients-with-Persistent-Symptoms/Page1.html

they conclude their research by saying

"The discovery that dysbiosis of microbiota is associated with persistent gastrointestinal symptoms in gluten-free celiac patients offers a new avenue of treatment for such patients."

so there is an association and maybe a link but it is hard(er) to prove cause.

I will point you too this link if you think you have a dysbiosis of your GI tract like  a Candida infection or SIBO or search for Mermaid's Mom or Feeneyja on this board.

Mermaids Mom had great luck treating her daughter for SIBO with similar tactics as revealed in the new research eating fermentable foods.

Here is  her updated thread on her daughter using the Nemechek Protocol most notable inulin a FOS.

https://www.celiac.com/forums/topic/118979-just-an-update-about-my-daughter/

here is a livestrong article noting foods naturally high in inulin and possible benefits and precautions you might want to be aware of before wholesale changing your diet.

Open Original Shared Link

But I would check for a mosquito born virus first or least do a timeline on mosquito outbreaks in the country of your visit.

And if you don't get lucky and you are still having GI problems after going gluten free try some of the methods listed above.

It couldn't hurt to eat more fermented foods. 

I personally swear by Kefir but I think they mean prebiotic foods like the kimchi previously mentioned or sauerkraut etc. 

I hope this is helpful.

***** this is not medical advice but it seems like an avenue at least worth exploring some more.

It fits the timeline and timeline is important in trying to find the real cause of your "mystery illness" known as idopathic in the medical jargon (of an unknown cause).

good luck on your continued journey.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”  this included.

Posterboy by the Grace of God,