At My Wits End

[sassysteph]

I've had various stomach issues for around 2 years now. They kept getting worse and worse. I ended up in the hospital last year during Easter. They found an ulcer and said that was the issue. The ulcer healed and by the next scope was gone. I went on my way and went back to regular eating...It didn't take long for the pain and problems to come back. I started looking for answers online and found mention of gluten issues causing a lot of the problems I'd been dealing with. I setup an appointment with another doctor - who just quickly said I didn't have that and moved on. I didn't go back and decided to go gluten free myself. I started feeling much better.. Then I hit another bump in the road - maybe I had gluten I was not realizing I was having or something. I ended up having a few ER visits - the only thing found then was a mass on my adrenal gland (which they are doing all sorts of testing for now). The doc decided to do another scope and I asked him if I went back on gluten could we test to find out if it was celiac disease - he said yes - i went back on but wasn't able I feel to really eat enough and it was only a month of eating it. I just did that recently and found out today that the scope and the biopsies yielded nothing other than to tell me that I have acid reflux and that's causing all my issues.celiac disease was negative. 

 

 I'm at my wits end. I know if I'm feeling better being off gluten then I should just go with that and not worry about a diagnosis but I have younger family members (and an elderly grandmother suffering from years and years of stomach issues - who now has so much damage in her stomach that they are talking about either having to cut out the damage or balloon her stomach to stretch it - both are dangerous at her age - 86) with issues that I feel it's more important for that box to be checked if that's what it is. Is it possible to still have celiac disease and have negative biopsies/blood tests? Although I haven't had a blood test. Could it be that I was off gluten for around 5/6 months and the 1 month back on wasn't enough to detect it? 

 

I feel so helpless and like I just wanna scream at the next doc that tells me nothing is wrong with me other than acid reflux and that I just need to take meds to stop the reflux for the rest of my life. When really acid reflux is barely ever an issue for me. So far the only things confirmed after years and tons and tons of money are:

 

Vit D deficiency

Acid Reflux

Adrenal Gland Mass (still looking into this with an endocrinologist)

Hiatal Hernia

 

My various issues that may or may not all be related

Pains in my bones/muscles

Stomach pains 

Feeling extremely tired after eating certain things (Diabetes tested and that was negative)

Headaches

Sinus issues

Plantar Fasciitis

Restless legs 

Rash on chest when eating gluten

Horrible bloated feelings - like I have a bowling ball in my stomach at times

Diarrhea/Constipation depending again on what I've eaten

Horrible problem w/ feet sweating

Burping

 

Most all of those seemed to disappear when I cut out gluten. Is this all in my head at this point or can I still have a legit issue with gluten and for some reason tests aren't seeing it??

 

 

 

 

 

[nvsmom]

Is it possible to still have celiac disease and have negative biopsies/blood tests? Although I haven't had a blood test. Could it be that I was off gluten for around 5/6 months and the 1 month back on wasn't enough to detect it? 

 

 

It is possible to have celiac disease with negative biopsies and tests, but it's unlikely. It is possible that you were not back on gluten long enough for accurate blood tests; a month should have been enouh for the biopsies but for blood tests doctors usually recommend about 2 months on a gluten challenge.

 

It's also possible that your symptoms are caused by non-celiac gluten intolerance (NCGI) rather than celiac disease. NCGI causes ALL the same symptoms as celiac disease except for the villi damage. The tTG, DGP and EMA tests all look for the antibodies that would cause damage to the gut - it won't show NCGI.  The AGA IgA and AGA IgG tests are thought by some to work for NCGI as well as celiac disease but they aren't very sensitive tests so not many doctors use them anymore. Now a days, only a positive response to the gluten-free diet is diagnostic, and it sounds like you have that.

 

At the very least, it sounds like NCGI. You could have celiac disease but luckily the treatment is exactly the same. The gluten-free diet.  I hope you have continued success on the diet!  

 

Oh, I had almost forgotten about my plantar fascitis, that symptom improved early on for me too.

 

Welcome to the board.

[WinterSong]

Sorry to hear that you're not doing well.

 

From the University of Chicago Celiac Disease Center: 

 

"The gut needs time to mount an antibody response that can be measured in the blood, which is why we recommend 12 weeks of eating gluten. If you experience symptoms immediately, it’s likely that the gut itself has quickly become damaged. In these cases, you and your medical professional could consider a shorter gluten challenge (~week) and then have a biopsy; we’ve learned that evidence in the gut can be seen within about a week of eating gluten-containing foods.

Diagnosis is not an exact science, each person responds differently to the presence of gluten in the small intestine and the amount of time it has been there. Be sure to work with your medical professional to adjust your diet, if needed, during your gluten challenge."

 

It may be that your challenge wasn't long enough to show damage during your biopsy. 

If you feel better going gluten free, I'd say you have an answer - either a gluten intolerance or undiagnosed Celiac. Luckily both are treated the same way. 

If you are concerned about your family, you could have everyone get a gene test to see if they carry the gene for Celiac - you could do this, too. It wouldn't give you a diagnosis, but it would at least show if you have the possibility of having Celiac. 

[pocahontas30]

I understand you wanting to have an official diagnosis. My family is dealing with this as well. I am certain that my husband and my oldest child have celiac (my 3 youngest were just diagnosed with celiac), but their blood tests were negative. It makes it harder to stick to the diet for them, and it makes it seem like it's more "optional" for themselves and others (restaurant, doctors, etc) to acknowledge a real need for gluten free without an official diagnosis. It's so frustrating that there are so many factors involved in getting that diagnosis, but the most important thing is that you start to feel better. You don't need a dr. to tell you if your diet is helping.

[GFinDC]

Hi,

 

Here are a couple articles about NCGI.  There is no standard testing for it yet.  It can cause serious symptoms just like celiac disease.  Since you weren't on the gluten challenge very long you may actually have celiac disease.  But you could also have NCGI.  Either way, the treatment is the same, 100% gluten avoidance for life.  Maybe in the future they will have better testing methods for these 2 conditions.  For now, if it makes you sick, don't eat it is a great plan.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html