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Negative Blood Test, Bummed I Still Have No Answer

Jake'sMom87

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Jake'sMom87 Newbie
Jake'sMom87
Posted

So I have been to so many doctors and specialists and have had no answers to my 2 years of symptoms. I had the celiac panel done yesterday and results were negative all the way around. I will post later when I have access to them, but they were definitely negative from what I saw. It's so frustrating I was honestly hoping I had celiac so I would have an answer to my problems. Just want to say thank you to everyone for taking the time to help me and I wish you all the best!

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w8in4dave Community Regular
w8in4dave
Posted

Well I wouldn't give up on it!! Alot of people have a negative 1st. It is very frustrating!! but that doesn't mean you don't have Celiac just means you tested negative. 

cyclinglady Grand Master
cyclinglady
Posted

Did you get your thyroid re-tested?  A few weeks ago, your TSH was near a 5.  That's too high even if it's within range.  Plus, you mentioned anxiety and eye pain.  I think you said that one eye was popping.  You should get a thyroid antibodies test.  It's possible to fluctuate between hyper and hypo.  I should know, it happened to me this past year and it drove my doctor nuts!  Finally, it's settled down.  

 

Don't give up.  You may have a gluten intolerance instead of Celiac.  That's what my husband has.  He's been gluten free.  Never tested.  Just went gluten-free as recommended by my allergist and his GP.  Took a year to get used to the diet, and now he's healthy and happy.  He never get tested -- why bother?  Gluten makes him sick!  

 

Good luck to you!

GFinDC Veteran
GFinDC
Posted

You might be one of the people who has symptoms but fails tests.  The article linked talks about people with celiac like symptoms but they don't pass the standard tests.  There are more of them than the people who do pass the tests.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Cara in Boston Enthusiast
Cara in Boston
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

deb-rn Contributor
deb-rn
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

I see my Dr today.  I felt so much better when I was off gluten.  I know I have to keep eating it until I'm blood tested, at least!  The thought of putting that in my mouth makes me not want to eat!!  Which is saying a LOT for me!  I don't care if I get a diagnosis or not, but IF he wants to test me, then I have to continue to eat it.  Now I realize what my "mystery illness" has been all these years!  Until recently, it was a minor annoyance!  The brain fog has been killing me lately.  I'm hoping my Insomnia will get better too!  I'm not afraid of the diagnosis.... instead very happy to know why I have felt the way I do for so long!  I have gained weight, which isn't the norm, but my body doesn't really react normally to ANYTHING anyway!  I see this as a chance to feel great and a challenge for my cooking skills.  Husband and I can both cook, so we will just slightly modify what we do.  We have a garden and that helps!

 

Good Luck to you!

 

Debbie

DazzlingCreations Newbie
DazzlingCreations
Posted

The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.

 

Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

 Hi Cara in Boston, I'm new here and I see you talk about the "gluten-free diet" could you reply with a link to where I could find that specific gluten-free diet. Thank you.

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kareng Grand Master
kareng
Posted

 Hi Cara in Boston, I'm new here and I see you talk about the "gluten-free diet" could you reply with a link to where I could find that specific gluten-free diet. Thank you.

 

 

Kind of an odd question on a forum that is all about the gluten free diet for people with Celiac Disease or Non-Celiac gluten Intolerance.

 

Eating gluten free is a medical diet, it isn't meant for weight loss.  If you think you have Celiac disease, you should get tested before going gluten free.

 

You might find this link helpful.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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