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Symptoms And Waiting For My Test Back!

MrsC

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MrsC Rookie
MrsC
Posted

Hi there, not sure where to start...

I am waiting for blood tests back that were drawn yesterday for Celiac Disease. Since my baby was born last year in June these are some of the symptoms that I have been having:

Muscle Pain

Muscle Weakness

Fatigue/Exhaustion

Pins and Needles in Arms and Legs

Burning in Shoulders and Hips

Extreme Joint Pain at Night

Really BAD Rashes that are SOOO ITCHY

Dry Skin

Frequent Bowel Movements every day

Painful Belly Gas

Here is what I HAVE been diagnosed with: Thyroiditis (At first Hyperthyroid, then Hypothyroid. So Now I am on Synthroid everyday.)

I have gotten the run-around from my bloodwork for so many things being negative: Lupus, Lyme Disease, Rhuemetoid Arthritis, Sed Rate, ANA, etc.

I have also been to the Neurologist every month since January and had Brain MRI scans, and a negative EMG study on the arms! I can't take this anymore. My primary doctor and neurologist both are basically stumped.

My sister is an Emergency Medican Technician on the ambulance here and suggested that I see a doctor in the ER that she knows is quite good - he is the one that suggested the tests for Celiac Disease, and also put me on Prednisone to see if it would help with the pain that I am in and clear up any inflammation (that's not working by the way!) Can that alter my blood test? I really hope it doesn't.

My primary care doctor appointment after the ER visit was when she told me to go on gluten free while we wait for the bloodwork. So I started this morning.

Anyway - thanks for reading if you still are - I know this was long....Does this sound like Celiac Disease to you?? Any thoughts appreciated! Thanks.

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MrsC Rookie
MrsC
Posted
  • Author

I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

mouse Enthusiast
mouse
Posted

Yes, stress can trigger the storm. So can operations. It sounds like it could be Celiac. I am glad that you found someone who would run the tests on you. Let us know how the diet goes for you. Remember you need your own separate toaster and do not cross contaminate. No letting the husband put his knife in the jar several times while putting something on his bread. The diet is not bad once you get the hang of it.

nettiebeads Apprentice
nettiebeads
Posted
I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

Oh yeah - mine showed up after a really really nasty sinus infection. And lots of everyday stress. Anyhow, how are you while gluten-free? Some show improvements almost immediately. You might want to exclude dairy also, for now. If it is celiac, then the villi are damaged and that makes it really hard to digest dairy. You'll be able to reintroduce it in about three months. As Armetta said, watch for cross-contamination. That seems to be the bigger issue than the diet itself in trying to stay healthy. Keep us posted!

Annette

MrsC Rookie
MrsC
Posted
  • Author

Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

nettiebeads Apprentice
nettiebeads
Posted
Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

Glad to hear that! Don't mean to scare you, but you need to check toiletries (nasty old wheat starch and wheat germ oil and aveno (oats)) run rampant there. Also any otc - I was being healthy, I thought, by taking vitamins. Turned out when I finally read the fine print on the label that they had gluten in them! Sheesh! Don't be surprised if it takes you forever now to do the grocery shopping. All that label reading.

Anyhow, keep up the good work and here's to more improvement!

Annette

MrsC Rookie
MrsC
Posted
  • Author

I have been starving between meals since going gluten free on Weds. Is that normal?

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Lister Rising Star
Lister
Posted

yeah its pretty nomal what i had to do is instead of eating 3 meals a day i eat 6 small meals a day, well right now im only eating 2ice a day but thats just because i am not getting hungry, but either eat small meals or snack on lite foods like carrots

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    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

      By Scott Adams · Posted

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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