Childhood diagnosis

[Chrissy308]

Hello, my name is Christina I was diagnosed with Celiac Disease at the ripe old age of 7 years old. I had a negative blood test but i guess everything else came back positive for celiac. My sister has had a positive test for it however.  I was presenting with severe headaches, stomachaches, and my colon was impacted I was so constipated and unable to go to the bathroom for a week, sometimes weeks at a time. I was on an incredibly strict gluten free diet for years only rarely ingesting gluten (usually on accident or when I would sneak a biscuit because I was a kid and I hated being gluten free). I would randomly get hives, I’m still not sure what that was from. Well long story short I started going off of my diet when I was a teenager and over the years I’ve gotten sicker and sicker and sicker. I get migraines, I’m chronically fatigued and I have arthritis like joint pain that is so severe it’s hard to get out of bed but the rheumatologist said that I’m fine. I keep getting told there’s nothing wrong with me but my mom has been insisting for years I go back on a gluten free diet. I’ve decided to try again to see if it will help but I was wondering how many of you have had celiac with a negative blood test? 

[trents]

Welcome to the forum, Chrissy.

How were you diagnosed with Celiac at age 7? Do you remember if they actually ran any tests or were they going on symptoms alone? How old are you now if you don't mind me asking. Just trying to get a handle on what kind of testing might have been available when you were 7. Have you been tested since then?

Have you considered that you may have gluten sensitivity rather than celiac disease? The symptoms and long term health risks are much the same but there is currently no test available to diagnose gluten sensitivity.

[Chrissy308]

I remember going to the doctors a lot and them drawing a ton of blood and I got x rays and stuff and I think my mom said that my bowels were impacted or that my colon was backed up I’m not sure what the difference is. I’m 21 now. It could b NCGS but I highly doubt it since I have several close relatives with a positive diagnosis. I haven’t been tested since then but I have gotten very sick since I stopped being gluten free. I forgot to mention that I got a DH rash on my face last year that I went to the doctor and they couldn’t figure out what it was. I didn’t even realize it was probably gluten related until later. 

[trents]

Did you ever have an endoscopy with a biopsy of the small bowel lining? That is the gold standard for diagnosing celiac disease and for distinguishing it from gluten sensitivity. Celiac disease damages the villi that line the small intestine which in turn inhibits nutrient absorption. The villi are tiny finger-like projections that create an enormous surface area for the absorption of nutrients. With celiac disease, inflammation from the ingestion of gluten rounds off and flattens the villi. Gluten sensitivity does not damage the villi but seems to have a more direct toxic effect. However, if you truly have DH, that is definitive for celiac disease. Have you actually been officially diagnosed with DH? Yes, we do get people with celiac disease who have negative results from the blood antibody tests. Usually, it's because their IGA is low or because they have already started on a gluten-free diet.

[Scott Adams]

Welcome to the forum! It sounds like you are still eating gluten, is that correct? If so, now is the time to get another blood test, before you go gluten-free, as the test requires you to  be eating gluten for 6-8 weeks beforehand.

[GF-Cate]

Hi Christina,

It sounds like it would be worth going though the testing process again at this stage in your life to get a clear/updated diagnosis. If your sister and other 1st degree relatives have celiac, you have a higher risk of having it (or developing it at some point in your life - people with the genes for celiac can develop it at any age). 

You probably already know this, but if you have celiac disease (an autoimmune disease) your body is attacking itself everytime you consume gluten. This can cause all kinds of nutritional deficiencies and trigger other autoimmune diseases and many other serious health complications as well, so having a diagnosis that you trust would be worthwhile. 

I would recommend finding a doctor who is well educated about celiac and who will take your concerns and health history seriously.

It is important to note that for the blood tests to be accurate you must be eating gluten daily for 6-8 weeks prior to testing (equivalent of 2 slices wheat-based bread), and 2-3 weeks prior to the endoscopy (which would follow bloodwork if your labs were positive for celiac).

So don't go gluten-free yet if you're planning on getting tested (the genetic test can be done & will be accurate regardless of whether you are consuming gluten).

If you want to start with the genetic test, you can order one yourself from: 
https://targeted-genomics.com/product/gluten-id-test/
(it's just a cheek swab)

These are 2 good resources that explain celiac testing:  

https://nationalceliac.org/wp-content/uploads/2019/11/Celiac-Tests-copy.pdf

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Hope that helps!