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Tests Negative -- Now What Should I Do?

OrangeConverse

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OrangeConverse Newbie
OrangeConverse
Posted

Hello everyone! I have been reading here for a few weeks and have been waiting for my test results to finally post. After waiting a month to hear back about my blood panel, I was called just now and they told me my tests were negative. I asked for the numbers and ranges and this is what I was told:

TTG-IGA 0.7 (0.8-3.7)

Serum IGG 2.97 (0-6)

Thyroid numbers were tested and are within a good range for me.

A bit of background, I was diagnosed with Hashimotos Thyroiditis at 12 and have been treated for that ever since (I am now 31).

About 4 years ago I had an extremely stressful event and since then I've really been struggling health-wise. I started having anxiety attacks. They were quite bad but in the years since I have gotten them a great deal more under control...and now only have one every few months.

I will have months of feeling good...then WHAM...all this starts up again. I've been on my latest round of feeling foul since June.

I wake up every single morning nauseated and had a hard time eating. Often times I can't eat anything until around noon.

I alternate between being quite C & D...sometimes in the same morning.

For the life of me, I can't concentrate on anything. I'm constantly wiped out and have a hard time staying awake after about 1 pm. I'm easily irritable. I'll go from being completely fine...to just snapping...and I know in my head I don't want to be snippy like that, but it just happens.

I always feel a bit of pressure in my gut and have found myself to be quite gassy, even when waking up in the morning.

I'm losing more hair than is normal (I do realize this can be associated with my thyroid as well).

I am an American living in the UK...and I'm a bit unsure how to proceed with things. When I went in to see the doctor two months ago, she prescribed the equivalent of Prevacid and sent me on my way. It took talking with a nurse multiple times to even convince them to test me for celiac

I'm willing to try a gluten-free diet and see if it helps. However, I know without a diagnosis my husband will treat me like I'm being a hypochondriac. He is very much black and white in his mindset -- if the tests say "negative" I don't "have it" and I should move on from there...

...but I'm still not convinced that it isn't a gluten issue.

I'm just so completely frustrated. I was really hoping the tests would just come back positive so that I finally would have a reason why I've been feeling crummy for so many years. I'm sick and tired of being sick and tired and just want to feel GOOD and be able to enjoy my kids and everything else.

Sorry for being so long winded. Thank you all for any advice you might have. :)

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Dixiebell Contributor
Dixiebell
Posted

Welcome OrangeConverse!

The blood tests are about 80% accurate. Thyroid problems are associated with celiac.

Have you had your vitamin and mineral levels checked? If you can you should get this done soon.

The best test is to eat completely gluten free for three months and then reintroduce gluten and see how you feel or not because you will probably feel so much better off it.

Laennie Rookie
Laennie
Posted

I was worried what would happen if my test came back negative too. I wasn't sure if my family would support me in going gluten free or just criticize me. Thankfully my biggest critic is the one that suggested Celiac & had read about the common false negative result. My test did come back negative but I had been gluten free almost 2 weeks by then. My husband has been there through the most significant symptoms & had already noticed a positive change in me. We talked about it & committed to going this route. My boss said last week that I haven't looked this good in almost 2yrs. I'm only on day 23 but it's a big enough difference that my immediate family & my in-laws are convinced. Hopefully if you can go gluten free you'll notice a big enough change soon like I did & it will help convince your husband & the rest of your family that you're not crazy :) Good luck!

OrangeConverse Newbie
OrangeConverse
Posted
  • Author

Thank you both so much for the replies!

I did have my Iron and B-12 levels checked and was told both were normal.

I do think I will try going gluten-free 100% for a few months and see if my symptoms improve. I've noticed a number of people here recommending keeping a food journal, so I will plan on that as well.

Dixiebell Contributor
Dixiebell
Posted

If you can get these levels tested too- Vitamin D, B6, Magnesium, Vitamin K and Potassium.

OrangeConverse Newbie
OrangeConverse
Posted
  • Author

If you can get these levels tested too- Vitamin D, B6, Magnesium, Vitamin K and Potassium.

Thank you so much for the advice. I'm going to make an appointment to go back in soon -- my husband is planning on coming as well. There is a history of autoimmune disorders in my family, and celiac in his family. We're starting to notice a few things with our middle child and I think it would be helpful for us both to talk this out with the doctor.

Regardless of what she says, I'm starting a gluten-free diet soon. I just can't shake the feeling that this is what has been giving me so much grief. At least giving it a 100% try for a few months will either prove me right or wrong!

laura4669 Apprentice
laura4669
Posted

Hi, I am new to this site as well. I was recently diagnosed with gluten intolerance through a stool analysis. My blood test came back negative, as did my endoscopy. I was told that I do not have "celiac", but I have a strong gluten intolerance. Another doctor told me that there really is not much difference between celiac and gluten intolerance, as both create an immune response. I'm not sure, it is all a bit confusing to me! I also have been diagnosed with hypothyroid, anemia, and I have constipation and hair loss. I feel tired ALL THE TIME. I am really hoping that I feel better soon. Good luck to you!

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  • 2 weeks later...
OrangeConverse Newbie
OrangeConverse
Posted
  • Author

Hi, I am new to this site as well. I was recently diagnosed with gluten intolerance through a stool analysis. My blood test came back negative, as did my endoscopy. I was told that I do not have "celiac", but I have a strong gluten intolerance. Another doctor told me that there really is not much difference between celiac and gluten intolerance, as both create an immune response. I'm not sure, it is all a bit confusing to me! I also have been diagnosed with hypothyroid, anemia, and I have constipation and hair loss. I feel tired ALL THE TIME. I am really hoping that I feel better soon. Good luck to you!

Thank you! I met with a nutritionist last week and she believes that I am gluten intolerant as well. I've been gluten-free for just under a week now. I was THRILLED when I woke up Sunday without nausea. First time in over 3 years! There sure is a learning curve though...grocery shopping now takes forever as I'm reading all the labels! Have you started a gluten-free diet yet?

Victoria6102 Contributor
Victoria6102
Posted

I have had many of the same symptoms as you! In July I had a blood test and my results were negative for Celiac Disease. But I continued to feel worse and worse so I had an endoscopy done which showed I did have Celiac Disease and had very extensive damage, so the blood test results were wrong. I would encourage you to get an endoscopy. Celiac Disease actually damages villae in your intestine so if you do have it they will be able to tell! But if you have a gluten intolerance, villae are not destroyed when you eat gluten. Gluten intolerance is like lactose intolerance: if you eat it, it makes you feel bad but it doesn't actually do any damage to your body. Celiac Disease sets off an autoimmune reaction and will be able to be seen in the endoscopy whereas the intolerance is just based on how you feel after you eat gluten. Hope this helps!

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