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Negantive Celiac Sprue Blood Test

Marini

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Marini Newbie
Marini
Posted

Even after my Celiac sprue blood work came back negative my symptoms continued until I totally eliminated all gluten from my diet. Finally 6 months later the nausea, diarrhea,skin lesions, weight loss and fatigue have finally ceased. The depression, anxiety, insomnia and a host of other physical ailments I had as well are gone as well. PROBLEM- I can't find a doctor who believes me! Has anyone else experienced this? Even the slightest amount of gluten starts an "attack"!

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krystynycole Contributor
krystynycole
Posted

Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

Mateto Enthusiast
Mateto
Posted

I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

Marini Newbie
Marini
Posted
  • Author

Don't worry about a doctor...I spent 7 years trying to convince there was something there...but as long as you feel better, what difference does it make? They don't need to give a prescription for you to eat gluten free...eat gluten-free for yourself, not the doctors!

I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

Marini Newbie
Marini
Posted
  • Author

I think we just have to accept that some doctors don't know what they are doing.

I never said ALL, I just said SOME. If you feel better when gluten-free, well, eat gluten-free. You probably are a coeliac or gluten intolerant, either way, as long as you feel okay!

I am SO MUCH better and grateful I found this site!

krystynycole Contributor
krystynycole
Posted

I am staying gluten-free for me and for the first time in YEARS feeling better! Thank goodness I found this site and forum to get some support. Thank you all so much! From what I have been reading on here I am sure I have the disease and am pretty sure my blood test was negative because it is advanced. I don't think I need an invasive biopsy to figure that out.

I didn't know until after the fact I had to be eating gluten (bad doctor) so of course mine came back negative. Oh Well I'm not going back to get retested. I've been gluten free for a year and a half and am feeling awesome and that's all that matters!

Mateto Enthusiast
Mateto
Posted

I am SO MUCH better and grateful I found this site!

:D Hurray! So am I, as well!

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GFinDC Veteran
GFinDC
Posted

Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

Marini Newbie
Marini
Posted
  • Author

Welcome to the site Marini and Meteto! :0

Marini, you are so right. It is best to eat what makes you feel right, regardless of tests or what other people may think of your diet. We are still learning about celiac disease and doctors re just starting to admit that there is such a thing as NCGI (non-celiac gluten intolerance). So lots of things about this condition and the diet are left to us to figure out ourselves. That's why this forum is so useful as we can get info from other celiacs and how their bodies respond to different foods.

And Happy Easter to both of you! :)

I am figuring out more and more things for myself thanks to this site and the info on the net. Years ago my eyelashes and eyebrows fell out and never grew back, my hair quit growing. Since switching to gluten-free products they have grown back! I can hardly believe it! My hair is past my shoulders for the first time since high school too. I do have lots of scars on my arms and hands from the lesions I had last fall (I wish my doctor would have biopsied them, someone told me she could have, but she never mentioned it) but the constant itching and rash is long gone. THANK YOU Celiac.com!

GFinDC Veteran
GFinDC
Posted

That's great Marini! wow, hair growing back in is fantastic. The damage to our intestines can cause us to not absorb nutrients, and that leads to lots of problems. The fat soluble vitamins are the ones they say don't get absorbed well.

Have you checked out the dermatis herpetiformis section of the board? That's the skin rash that people with celiac sometimes get. Some of the people with DH say that they have to avoid iodine in their diet or they get flares of the rash.

Dermatitis Herpetiformis on celiac com

This site has a listing of the fat soluble vitamins and their uses in the body. I don't think this is a complete list of symptoms though.

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      Welcome to the forum, @Pamp8, I stopped foods high in iodine, like dairy and eggs, kelp and iodized salt.   I take Niacinamide also called Nicotinamide or Vitamin B3.  I haven't taken the tetracycline with it.   It seems to make the blisters disappear quicker. I also use tallow balm, a cream made from beef fat, which has been used for thousands of years.  It is absorbed into the skin better than creams made from plants.  It helps prevent or lesson scarring.  See the study below. Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide "The combination of tetracycline and nicotinamide can be recommended as a useful therapy for patients where dapsone is not available or for patients who do not tolerate dapsone." https://pubmed.ncbi.nlm.nih.gov/30390734/
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