Possibility of Being Seronegative?

[Amaryllis3]

Hi everyone! This is my first post to this forum. I’m hoping to get some advice because I am not really sure what to do. 

I am a 19 year old female with a family history of autoimmune disease and a paternal grandmother with celiac disease, though I have not been diagnosed.

I have been eating gluten free for around 3 years because I was getting stomachaches. However, last year I decided that since I had never been diagnosed with celiac disease, I wanted to start eating gluten again. At first it went okay, but within 2-3 months, I noticed I had lost a ton of weight, was getting an itchy rash all over my arms, was constantly bloated and gassy, and was missing all of my periods. I took gluten back out of my diet and slowly began to feel better. 

After all that, I went to the doctor, who ran some blood tests and had me do a gluten challenge. It turned out I tested positive for the celiac disease gene, hla-dq2, but my antibodies were negative, so the doctor told me I did not have celiac disease. She said I could eat some gluten but should try and stay away from big gluten meals because I’m likely gluten sensitive. However, although I have tried eating small amounts of gluten, my symptoms came back. I’ve since cut out all gluten, and I’m hoping I’ll feel better soon. 

I’m not sure if it’s worth trying to get a second opinion or what I should really be doing now. If I really do have celiac disease, I would like to know because that would mean I need to be much more careful about what I’m eating than if I were gluten sensitive. Can gluten sensitivity cause unexplained weight loss and missed periods? I know that seronegative celiacs exist, but I don’t know how common it is or if I’m likely to be one. Should I pursue further testing even though my antibodies were negative or should I assume I’m gluten sensitive and be stricter about it?

Thanks everyone!

[trents]

Amaryllis3, welcome to the forum!

First, I wonder which serum antibody tests your doctor ran as many doctors don't run the full panel of tests that can be done. Do you have  that info?

Second, I would pursue an endoscopy and a biopsy of the small bowel to check for villi damage. But realize, that with both the blood tests and the endoscopy/biopsy, you need to have been eating a significant amount of gluten (1-2 slices of bread) for about 8 weeks in order for the tests to be valid. So if you pursue this further, you would need to go back to eating gluten regularly and be willing to suffer the health side effects it seems to bring you.

Third, if #2 is not doable for you, you need to commit to eating completely gluten-free and educate yourself thoroughly as to the issue of cross contamination so as to avoid even trace amounts of gluten exposure insofar as is possible.

Fourth, realize that it is typical for Celiacs to develop intolerances to other food items such as dairy and soy. Those aren't the only two but seem to be the most common.

As far as you menses issues go, I wonder if you are suffering from nutrient deficiencies due to damage to the small bowel villi. That's another reason I would go for an endoscopy/biopsy if I were you. You need to know. And if you are a celiac or if you are merely gluten sensitive you you may need not only to eliminate gluten but also may need to start some vitamin and mineral supplementation. 

Please forgive me for being nosey, but do you suffer from an eating disorder? Many young women with menses irregularity do. And I realize that is somewhat of a stereotype.

[Amaryllis3]

41 minutes ago, trents said:

Amaryllis3, welcome to the forum!

First, I wonder which serum antibody tests your doctor ran as many doctors don't run the full panel of tests that can be done. Do you have  that info?

Second, I would pursue an endoscopy and a biopsy of the small bowel to check for villi damage. But realize, that with both the blood tests and the endoscopy/biopsy, you need to have been eating a significant amount of gluten (1-2 slices of bread) for about 8 weeks in order for the tests to be valid. So if you pursue this further, you would need to go back to eating gluten regularly and be willing to suffer the health side effects it seems to bring you.

Third, if #2 is not doable for you, you need to commit to eating completely gluten-free and educate yourself thoroughly as to the issue of cross contamination so as to avoid even trace amounts of gluten exposure insofar as is possible.

Fourth, realize that it is typical for Celiacs to develop intolerances to other food items such as dairy and soy. Those aren't the only two but seem to be the most common.

As far as you menses issues go, I wonder if you are suffering from nutrient deficiencies due to damage to the small bowel villi. That's another reason I would go for an endoscopy/biopsy if I were you. You need to know. And if you are a celiac or if you are merely gluten sensitive you you may need not only to eliminate gluten but also may need to start some vitamin and mineral supplementation. 

Please forgive me for being nosey, but do you suffer from an eating disorder? Many young women with menses irregularity do. And I realize that is somewhat of a stereotype.

Thanks so much for the reply!

My doctor ran the deamidated Gliadin abs for IgA and IgG as well as the tTG for IgA and IgG as well as EMA IgA. All of these came back negative. 

When my doctor had me eat gluten for the blood test, she said there was only a need to eat it for 2 weeks. I had already cut out gluten for 6 weeks before that appointment, and I was eating significant amounts of gluten for about 2 and a half weeks before the blood test. The challenge was short enough where I didn’t experience many of the same effects I did the first time and in the last couple months. Maybe that created a possible false negative? I feel I should also mention that my doctor ran tests for vitamins and signs of malnutrition and they came back normal. I also do not have an eating disorder. 

[trents]

I'm sorry but your doctor was incorrect when saying that you only have to be eating gluten for two weeks to get a valid antibody test. Unfortunately, many general practitioners and more than a few GI docs are not up to speed when it comes to diagnosing and advising patients with regard to celiac disease. Two weeks may have been acceptable for the endoscopy/biopsy but the serum antibody test actually needs longer gluten exposure to be valid. I am sure that those who are regular participants and "celiac veterans" here on the forum will back me on this. The practicing medical community is still behind the curve when it comes to celiac disease awareness and research. This has slowly improved in the almost 20 years since my diagnosis but there are still many gaps.

Edited January 23, 2021 by trents

[Scott Adams]

Yes, according to the Mayo Clinic:

Quote

Prior to celiac disease blood tests: 1/2 slice of wheat bread or 1 wheat cracker should be eaten each day for at least 12 weeks;