Negative test results!!! Unsure where to go from here

[iwant2believe]

Hi, my first post here, I hope I'm doing this right... It's probably going to be long, sorry! A lot has happened!

I've lurked this board for a while and after deliberating on it decided to try and pursue a possible celiac diagnosis. For context, I'm female, 23, and have a lot of the textbook symptoms. Chronic bloating, fatigue, acne, underweight without trying and struggling to gain weight now that I'm trying to, haven't had a period in 5 months, etc. All of these are things that only really picked up and became noticeable over the last couple of years.

While experimenting with FODMAPS and such, trying to see if I could associate my bloating to any particular foods (which I didn't really have any success with...) I decided to cut out gluten for 5 days or so, just to see if there was a noticeable difference, and there was- it wasn't drastic, but my bloating seemed a bit less than usual and I had energy to spare. At that point I was aware about celiac testing, the gluten challenge, etc and told my GP that I was interested in getting a blood test. She instructed me to eat gluten daily for 3-4 weeks beforehand...

So I did, and I couldn't even make it 3 weeks. I had flu-like symptoms (???!) the first few days, awful fatigue, and the bloating was the worst I have ever had it. I was also suicidally depressed and breaking down into random crying fits several times a day the entire time this was going on. When I told my GP she told me to just come in early, so I caved and had the blood draw done after eating gluten for only 18 days, because it was affecting my ability to work and there was really no other option, IMO. Still don't think I was being unreasonable by deciding that.

Anyway, the results were negative. I kind of expected it. I know the gluten challenge period before blood testing is supposed to be longer than 3-4 weeks, but I told the GP about how I only went gluten-free for 5 days and figured that was why her given time was shorter. But after thinking on it more, I feel like before that, I may not have had enough gluten in my diet for it to really contribute to a strong result? Before gluten became a thing that I paid attention to at all, I definitely ate it regularly, but not every day. It was more like a few times a week, not deliberate, just a result of my food preferences shifting over time. Conversely, there was a point in late 2020/early 2021 where my fatigue was so bad I could barely function, and at that time there were multiple gluten-containing products that were part of my diet every single day.

All of this to say... I think I may have messed up my panel results for myself, and I don't really know what to do now. I feel like it didn't bring me any closer to an answer. Further future testing is of course an option but doesn't feel viable at all considering how badly I've been messed up from just a ~2 week gluten challenge. I was fairly sure my results would be at least borderline since I was still eating gluten kinda regularly before this but they seem so thoroughly negative and normal that now I'm worried I'm making all of this up or something, even though I should be happy I apparently don't seem to have it! 

Does anyone have any advice or has anyone else been in a situation similar to this? What would you do or what did you do? I just feel so lost. I can share the test results too if anyone is interested in interpreting them, I admittedly don't understand what the individual parts really means that well. 

[trents]

Welcome to the forum, iwant2believ!

Have you considered the possibility of having NCGS (Non Celiac Gluten Sensitivity)? Many of the same symptoms as celiac disease but since it does produce antibodies or damage the villi. There is no test for NCGS so celiac diseae must first be ruled out. It is 10-12x more common than celiac disease. Some experts consider it to be a precursor to celiac disease. Anyway, the antidote is the same for both, total avoidance of gluten.

Edited May 5, 2022 by trents

[iwant2believe]

56 minutes ago, trents said:

Welcome to the forum, iwant2believ!

Have you considered the possibility of having NCGS (Non Celiac Gluten Sensitivity)? Many of the same symptoms as celiac disease but since it does produce antibodies or damage the villi. There is no test for NCGS so celiac diseae must first be ruled out. It is 10-12x more common than celiac disease. Some experts consider it to be a precursor to celiac disease. Anyway, the antidote is the same for both, total avoidance of gluten.

Thanks trents!!! NCGS was one of my first thoughts too. At this point I feel like it's super likely that I have "at least" NCGS. Definitely going to commit to a GFD in any case, the gluten challenge was enough to convince me!

I didn't know that about some considering it to be a precursor to celiac disease though. That is really interesting and makes a ton of sense.

Is NCGS known to cause other food sensitivities (fructose, lactose, etc) the way celiac disease is able to?

[trents]

6 hours ago, iwant2believe said:

Is NCGS known to cause other food sensitivities (fructose, lactose, etc) the way celiac disease is able to?

Not sure I would say that it "causes" other food sensitivities but it may be associated with other food sensitivities in the sense of any and all of them being related to immune system dysfunction. I know people who have NCGS but also cannot handle dairy. And keep in mind that not all dairy sensitivities are due to the lactose in milk. For some people, it's not the lactose but the protein casein that is the issue.

[Scott Adams]

Welcome to the forum! I just want to mention that for blood tests the Mayo clinic recommends eating 2 slices of wheat bread for 6-8 weeks, otherwise the blood test results may be false negative. Since you are unable to manage doing this for even 4 weeks due to severe symptoms, I think it is safe to assume that you have either undiagnosed celiac disease, or non-celiac gluten sensitivity (no tests for this yet, but ~10x more have this than CD), and either of this conditions require a gluten-free diet. It seems like you have your answer, and should try the diet for a few months to see how it goes.

[Wheatwacked]

Hello, @iwant2believe,

First, I'll just say that there are industries spending tons of money to convince you not to believe. You are lucky to have found a doctor who listens and takes you seriously. Can't breathe? There's a pill for that and you can dance your children off to the school bus. High blood sugar? There's an app for that.

On first read through I saw Vitamin D deficiency (depression), Thiamine (B1) deficiency (no energy), Choline deficiency (bloating), Folate (menstrual irregularity) and Iodine deficiency. (Muscle tone, and menstrual irregularity).

The only one with a reliable blood test for status is vitamin D.  The problem is as that as far as the health boards are concerned, they only look at the minimum needed to avoid Rickets and soft bones, >29 ng/ml. Our species developed living and working in the sun most of the day. A Lifeguard in August has a D blood plasma measurement of 80 ng/ml. My lifetime of Seasonal Affective disorder, progressively worse as I got older until it became permanent, was reversed when I started taking 250 mcg (10,000 IU (a day) of vitamin D. Despite dire warnings of impending doom from hypervitaminosis from too much D, it is rarely seen. As to safety, controlled studies on kidney transplant patients were done, using various doses, up to a one-time bolus of 1.25 million IU (1,250,000 IU) with no ill effects. On the other hand, my son who is a lifeguard and was diagnosed with Celiac Disease as an infant, was tested last August with the result of Low D <29 ng/ml and >19 ng/ml).

Thiamin is essential for breaking down carbohydrates to be used in the mitochondria for energy.

Choline is essential for DNA, Cell membrane and mitochondria structure, and acetylcholine (nerve synapse transmission). It is estimated that only 10% of Western Diet consumers ingest the Adequate Intake (AI). Choline also works with B6, B12 and folate to metabolize homocysteine. High Homocysteine blood level tests can be an indicator of cardiovascular inflammation so in my opinion might indicate a deficiency in one or all of those vitamins.

When you stop eating wheat flour you are no longer getting the folate it is fortified with. Folate and choline deficiencies have been linked to neural tube birth defects.

The first effect on me of a sheet of Nori a day for iodine was improved muscle tone. My brother mentioned that I look like I've been working out. I am the ultimate couch potato. In one study, 66% of the childbearing age women tested for iodine (urine test) were deficient.

Until I started the GFD at 63 I was a mouth breather. Now I breath through my nose like normal people. The doctors, when I would mention it, all said it is what it is, some people are like that. They are sadly misinformed and have bought into the advertising. After GFD, if I ate gluten my first symptom was sniffling and sinus congestion. Lately, it does not affect me if I occasionally contaminate but I take 11 different vitamins and a B-complex daily. It is a pain, but my health is constantly improving. Smoking cessation never helped but gluten cessation did.

Vitamin D and Depression: Where is all the Sunshine?

Choline deficiency increases lymphocyte apoptosis and DNA damage in humans

How Folic Acid Can Improve Your Menstrual Cycle

Iodine and fertility: do we know enough?

The Wolff-Chaikoff Effect: Crying Wolf?

Edited May 5, 2022 by Wheatwacked
typo's

[RedFacedJock]

Regardless of the test result. If Gluten is making you that unwell, then simply avoid it. You don't need a doctors confirmation. You simply need to listen to your own body and how it responds to certain things. That's where you should go from here.