Negative Test but I have All the Symptoms!

[Hannah24]

  Hello! I have been having symptoms of Celiacs for several years now with "Flare up" episode as I call it. I finally decided to get a colonoscopy and endoscopy done June of last year and had all the blood test done and everything came out Negative. The only thing they said was they did see inflammation. This was all after realizing I was extremely low iron and had to have 2 Iron Infusions done. I have almost ALL of the symptoms and have been feeling extremely fatigued and bloated lately and another symptom that started awhile back is the numbness/tingling in my hands and feet which I had no Idea was even a symptom until I recently was looking up the symptoms again. 

  I was wondering if anyone has gone through having all the symptoms W/Negative results? what you are doing about it? I'm only 35 and I generally feel unwell most of the time and I'm miserable. I'm at my wits end and I feel like doctors think I'm just crazy at this point trying to make up something that's not there! 

  I have now started a Gluten-Free diet (3/18/24) just to see if I possibly am just Gluten intolerant and see if this helps at all. If you have done that, has it helped? How long did you start seeing results of going Gluten - Free?

  Any help would be greatly appreciated! Thank you so much! 

  

[plumbago]

So sorry you are going through this @Hannah24. You should try to get to the bottom (ie find out the exact cause) of the low iron (if low iron is the root of it). Do you also have low hemoglobin? What is/was it?

It's great that you got your GI tract checked out.

Why would your docs think you are crazy if you've had two iron transfusions? (BTW - did the iron transfusions help with your symptoms?)

Also general anemia can have a lot of different causes, including low iron. Low iron can have different causes. Other causes of general anemia could be a b12 deficiency. It can be confusing to separate it all out and may require the knowledge and skill of a hematologist.

Edited March 27, 2024 by plumbago

[trents]

Anemia can contribute to false negatives in the celiac antibody testing as can low total IGA. Do you have a record of what blood antibody tests they ran? Also, did they do a biopsy when they did the endoscopy?

Edited March 27, 2024 by trents

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

[knitty kitty]

Hello, @Hannah24

Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.  

Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease. 

Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies.

The DNA test would be helpful.

[trents]

Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.

[Hannah24]

23 hours ago, plumbago said:

So sorry you are going through this @Hannah24. You should try to get to the bottom (ie find out the exact cause) of the low iron (if low iron is the root of it). Do you also have low hemoglobin? What is/was it?

It's great that you got your GI tract checked out.

Why would your docs think you are crazy if you've had two iron transfusions? (BTW - did the iron transfusions help with your symptoms?)

Also general anemia can have a lot of different causes, including low iron. Low iron can have different causes. Other causes of general anemia could be a b12 deficiency. It can be confusing to separate it all out and may require the knowledge and skill of a hematologist.

My GI Doctor took blood work and said my Iron levels were actually high. But they took my blood a couple weeks after my infusion so I'm thinking that's why they were showing so high, but they knew I had the infusions. The infusions did help greatly but I am also on an Iron pill that I can instantly notice if I have not taken it for a few days. 

12 hours ago, trents said:

Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.

Yes, I have read up on that! Thank you so much! I sure that will be fun! Hahaha

[Hannah24]

12 hours ago, knitty kitty said:

Hello, @Hannah24

Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.  

Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease. 

Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies.

The DNA test would be helpful.

 I've not heard of the DNA test I will definitely look into that. And I did not know that the neuropathy was symptoms of vitamin deficiency. I have been trying to get on a good vitamin regimen. Thank you!  

[Scott Adams]

The number of genes associated with celiac disease is more than two, but there are two main genes that are commonly tested for celiac disease susceptibility. These genes are HLA-DQ2 and HLA-DQ8.

• HLA-DQ2: The majority of individuals with celiac disease (about 90-95%) carry the HLA-DQ2 gene.
• HLA-DQ8: Around 5-10% of individuals with celiac disease have the HLA-DQ8 gene.
• Other Genes: While HLA-DQ2 and HLA-DQ8 are the primary genes associated with celiac disease, having these genes doesn't guarantee that someone will develop celiac disease. Additionally, a small percentage of individuals with celiac disease don't have either of these genes. This suggests that other genetic factors may also play a role, though they are less common.

This article has more information about the genes associated with celiac disease:

 

 

[JustGemi]

Scott,

 

Can you look at my post and tell me if my numbers are off the chart!?  I won't be able to see my Gastro for another 7 weeks and I am freaking out at the numbers.

JustGemi