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So Many Things Wrong With Me And No Answers...help

Angiemommyof3

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Angiemommyof3 Newbie
Angiemommyof3
Posted

Hi my name is Angela and I don't even know where to begin so I am just going to jump into what I have been feeling lately. I have a lot of numbness and tingling which Drs thought was MS but all my MRIs have come back normal. I have not been feeling right at all and all tests I have taken have been normal

I have been diagnosed with Bipolar about 6 yrs ago I have severe anxiety I have Graves Disease/Thyroid Disease I had a precancerous nodule removed 3 years ago. I have endometriosis, severe anxiety ADHD and PMDD...

Could gluten be causing all this?? So many of these symptoms I keep reading over and over. I was tested for celiac through a blood test and was found not to have it. Is that the only way to test?  

I am overwhelmed and so frustrated. Ive been in the hospital 2 times cause I thought I was having a stroke now nothing.

Any advice gluten related or not would be of great help!!!

thank you for reading

Angela

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.

You might as well get tested for celiac disease. Many of your symptoms could be linked to celiac disease or non-celiac gluten intolerance (NCGI) so you might as well go for it. Continue to eat gluten until testing is done or it may not be accurate, 2 slices of bread per day is enough.

The tests to ask for are the tTG tests, DGP tests, EMA IgA, and the total serum IgA. There is also biopsies from an endoscopy for further testing.

If all tests are negative, then NCGI could be the culprit. You would need to go gluten-free for a few months to test that hypothesis.

I think you should consider rechecking your TSH, free T4, and free T3 as well. Thyroiditis symptoms an feel a lot like celiac disease symptoms to me.

Best wishes. I hope you find an answer soon.

1desperateladysaved Proficient
1desperateladysaved
Posted

I agree with NVSmom.  You may not have been thoroughly checked for celiac.  It can cause thyroid issues.  My Functional Medicine Nurse thought that ADHD can be linked to gluten intolerance.  It is certainly possible and I would do all of the tests the doctors do and then try the diet for several months.

 

I hope you will have a definative diagnosis and it can make a big difference in your life.

 

D

  • 2 weeks later...
Peanutplus7 Newbie
Peanutplus7
Posted

Hi my name is Angela and I don't even know where to begin so I am just going to jump into what I have been feeling lately. I have a lot of numbness and tingling which Drs thought was MS but all my MRIs have come back normal. I have not been feeling right at all and all tests I have taken have been normal

I have been diagnosed with Bipolar about 6 yrs ago I have severe anxiety I have Graves Disease/Thyroid Disease I had a precancerous nodule removed 3 years ago. I have endometriosis, severe anxiety ADHD and PMDD...

Could gluten be causing all this?? So many of these symptoms I keep reading over and over. I was tested for celiac through a blood test and was found not to have it. Is that the only way to test?  

I am overwhelmed and so frustrated. Ive been in the hospital 2 times cause I thought I was having a stroke now nothing.

Any advice gluten related or not would be of great help!!!

thank you for reading

Angela

Hi Angela,

My 17 year old daughter had tingling, numbness, severe anxiety, fibromyalgia and chronic fatigue symptoms, migraines, etc. She got off all gluten and became a different person in two weeks. (with some people it takes much longer) She now is off dairy, msg and yeast also. Celiac testing is great if you can do it! But it's not always conclusive. We chose to do the elimination diet and find out that way. Ten months later, my daughter's symptoms are 80% gone now. She accidentally had 3 bites of gluten last weekend and all her symptoms came back. That's proof enough for she and I!

Do one or the other: full testing or the elimination diet. You deserve to have some answers and feel better!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 I was tested for celiac through a blood test and was found not to have it.

 

It's great that they tested you, but the bloodtests are not as accurate as you would think/hope they would be - I've seen estimates that a negative bloodtest is only about 70-75% accurate.  :angry:

You could also either have a gluten sensitivity or a wheat allergy, which is a different animal but can cause the same symptoms - and would not test positive for Celiac.

 

There's no danger in going completely gluten-free and seeing if your symptoms improve.  Keep in mind that if you do this, you may never be able to get an official diagnosis because to do so you'd have to go back on gluten - which can be painful.

gwynanne4life Rookie
gwynanne4life
Posted

I have been gluten-free free for almost 8 weeks now.  After about 3 weeks all of my stomach symptoms subsided (bloating and GERD), but then I began having tingling in my legs and feel, and hands, muscle soreness all over my entire body, and all I could think was - "am I going to now have to see a Neurologist to see if I have MS?   The tingling is starting to subside - but it was keeping me awake at night along with restless legs which I never had prior to eliminating Gluten.  I still struggle with fatigue, and the muscle tension/soreness is still there too.  I have so much to do to prepare for the holidays - I hope I get some strength and energy to push through.  I am taking vitamins - all of the B's and Vitamin D3 and Calcium, Magnesium and began a good pro-biotic just yesterday.  My GI Doctor said I should take a multivitamin on top of what I'm taking because I could have nutrient deficiencies for which they have no tests for.  Here's hoping I feel better soon. 

cyclinglady Grand Master
cyclinglady
Posted

I have been gluten-free free for almost 8 weeks now.  After about 3 weeks all of my stomach symptoms subsided (bloating and GERD), but then I began having tingling in my legs and feel, and hands, muscle soreness all over my entire body, and all I could think was - "am I going to now have to see a Neurologist to see if I have MS?   The tingling is starting to subside - but it was keeping me awake at night along with restless legs which I never had prior to eliminating Gluten.  I still struggle with fatigue, and the muscle tension/soreness is still there too.  I have so much to do to prepare for the holidays - I hope I get some strength and energy to push through.  I am taking vitamins - all of the B's and Vitamin D3 and Calcium, Magnesium and began a good pro-biotic just yesterday.  My GI Doctor said I should take a multivitamin on top of what I'm taking because I could have nutrient deficiencies for which they have no tests for.  Here's hoping I feel better soon. 

I think you will feel better soon!  It takes time for vitamin deficiencies to improve.  I had the tingling and achiness as well.  I was worried that I might be getting fibromyalgia since my Mom has it (she tested negative for celiac disease).  Those aches and tingling are dissipating slowly as well as the fatigue (assuming you don't have anemia or thyroid issues).  

 

Here's my advice for Christmas.  I was so anemic last Christmas and my thyroid was swinging from hyper to hypo, that we decided not to travel to visit family and I did not purchase any gifts except for my daughter and then a large order of In-N-Out Burger merchandise (e.g. beach towels, mugs) for my family to use at the vacation lake home.  I did not host any events at my house.  We just laid low.  On Christmas Day we Skyped and watched that big box of In-n-Out merchandise get opened and everyone had a good laugh.  The kids even performed their annual Christmas pageant via Skype and watched Ping Pong tournaments and Rock Band performances.  Lots of fun!

 

This year, we will travel, but no gifts, except for my daughter.  I emailed everyone and I think they all felt a sense of relief!    We're going out for a few plays, roller skating, multi-generational bunco and the movies.  This year the focus is giving time!  

 

Try to set some limits and enjoy the holidays!

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

This year, we will travel, but no gifts, except for my daughter.  I emailed everyone and I think they all felt a sense of relief!    We're going out for a few plays, roller skating, multi-generational bunco and the movies.  This year the focus is giving time!  

 

 

This is not related to Celiac, but I know some folks feel weird about not doing the gift-giving thing at the holidays so I just wanted to share this seeing how it came up...  My family decided a few years ago to stop with the Christmas gifts.  My mother is retired and on a fixed income and can't afford to buy gifts - and if we get her something of course she feels obligated to do so too.  And my sister's kids are older teenagers who really are not in need of anything - and once they get to about 13 good luck figuring out what they want or like.  :huh:   So anyhow... what we do now is we all chip in about $30 and donate to a charity that uses it to buy farm animals for a family in Africa.  And we all get together for a nice (now gluten-free) dinner and just enjoy each other's company.  It really does take almost all of the stress out of the entire holiday season.

 

The only exception to the no-gift rule is my sister's family dog.  He won't let me in their house at Christmas time unless I bring him is annual Christmas bone.  :D

greenbeanie Enthusiast
greenbeanie
Posted

Welcome, Angela. I had some of the same symptoms (more info in my signature below) and was hospitalized for ataxia, numbness, and tingling a few years ago. They suspected MS, but I also had normal MRIs, so they finally sent me home without a diagnosis. I had some unusual mineral test results in the hospital too, but nothing that alarmed them or led to any GI testing at the time, despite 20 years of intestinal troubles and rashes too. It was very frustrating because I knew something was really wrong, but my doctor at the time kept dismissing my concerns and did no follow-up once they'd ruled out MS.

Anyhow, I finally found a better doctor who agreed to do thorough celiac testing for both me and my daughter. My tests were negative, but I had so many symptoms that the GI strongly recommended that I go gluten-free immediately after testing. My daughter had positive blood tests and biopsy and has a celiac diagnosis. Making our house gluten free was the best thing we're ever done! She is absolutely thriving, and I am rash-free and coordinated for the first time in years and years. Magnesium supplements helped with the leg tingling, and D3 supplements brought up my D to good levels in about four months. It took about that long for the rashes to improve, too. The coordination issues changed more slowly, but that keeps getting better too. Even though I don't have a clear diagnosis, there is absolutely no doubt that a gluten free diet has cleared up many, many problems that I'd had for decades. It's certainly worth a good long try! It is so frustrating when you know there's a problem and the doctors can't figure it out or won't take it seriously.

Good luck, and I hope you feel better soon!

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    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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