I hope some can give me a peace of mind

[SarahRenee]

Hi all! I hope everyone is doing well. I am a 33 year old mom of 4. About 10 months ago I started to have extreme stomach problems: bloating, nausea, running to the bathroom several times a day and only liquid coming out. I couldn't leave the house some days. I put up with this for a while hoping it would just get better, but it never did. I finally thought maybe I was lactose intolerant, so I cut out dairy which helped a little but didn't solve the problem. 

 

June 3rd I decided to do a juice cleanse hoping it would help. I drank only juice for 5 days. During the cleanse I thought maybe gluten was the problem, so after the 5 day cleanse was up I stayed away from dairy and gluten. Things improved drastically, but after 2 weeks of avoiding gluten I read about Celiac Disease and how you need to stay on gluten to be tested. I made an appointment with my doctor, and he said he would test me but may come out negative since I've been gluten free. The test did come out negative, and I will post the test results. My question is would going gluten free for 2.5 weeks actually affect the test results? Can I feel good about the negative test?

[GFinDC]

Hi SarahRenee,

Welcome to the forum!

Unfortunately, being gluten-free does impact the accuracy of the celiac tests.  They can't be relied on if you weren't eating gluten.  What is pretty reliable though is your bodies reaction to foods.  If you felt better going gluten-free there has to be a reason for that.  Most people don't have a bad reaction to eating gluten.  You can see that for yourself by going to the grocery store and watching all the people buying bread, cookies, cereal, pizza and more.  They would not do that if gluten made them sick.  You shouldn't do eat it either though, as you know gluten does make you sick.

You can choose to go back on gluten for 12 weeks to get the blood tests redone.  12 weeks is the standard time to eat gluten before the blood tests.  Or you can stay gluten-free and live without gluten.

[cyclinglady]

Hi!  

Labs have different ranges.  Did the lab ranges show that the celiac results were negative?  Also, it is odd that the standard TTG test was not taken (or do you not post?).  The TTG is usually the “Go to” screening test.  The DGP tests usually are not given during a screening (first round).  

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

It only takes one positive on the complete celiac panel (and you are missing three tests) to move forward with a GI consult.  Some people do not have any antibodies (about 10%) yet they have celiac disease.

For example, I test positive to only the DGP IgA.  Usually, the TTG is ordered.  If my GI had not ordered the complete panel, my diagnosis would have been missed.  

Now this is rare, but Dr. Fasano did state that some celiacs can alter their tests results by being gluten free in as little as two weeks.  This could be possible if you were just juicing.  

Consider getting a GI consult.  You may have celiac disease or something else like Crohn’s (lots of IBD patients say that going gluten free helps them — like my neighbor who has Crohn’s).   Something is definitely wrong.  

Edited July 4, 2019 by cyclinglady

[SarahRenee]

The lab results said my results where in the normal range. Less than 20 is negative. I believe this to the TTG below? I have never eaten a lot of bread or pasta, etc. I would assume I did consume gluten daily before I went gluten free because I had problems. I also recently did the 23andme to see if I have the Celiac gene. I was positive for HLA-DQA1 gene.

I know it's gluten that was causing problems. But, could it be IBS or just a gluten intolerance? I don't know if I should do the gluten challenge and get tested again just so I can feel 100% sure. I just feel so horrible when I eat gluten, and Things have gotten normal eating gluten free. Having the Celiac gene along with symptoms worries me, but I feel my Celiac blood test results were so low that I don't have Celiac. 

[cyclinglady]

Gene testing helps rule out celiac disease and not diagnose it.  That is because about 35% of the population has the genes that MIGHT develop into celiac disease.  Only a tiny few do.  Some celiacs are seronegative as well (blood tests Are negative).  

You can either get to a GI for an endoscopy that can determine if you have celiac disease (and rule out things like Crohn’s) or trial the gluten-free diet for at least six months.  It sounds like gluten free is resolving your issues.  

I thought for sure my niece had celiac disease.  She did not (negative blood tests, full panel and endoscopy).  Instead she had Crohn’s Disease.  Both are autoimmune and primarily impact the GI tract.   

My hubby is not formally tested.  He went gluten-free 20 years ago per the advice of two medical doctors and never looked back.  He needs to be strict.  I wish he would do a challenge, but he knows gluten makes him sick (that first year was a difficult as mistakes were made with the diet).  So, does he have celiac disease like me? Who knows?  Who would remain gluten free for so long if they did not think the diet was working?  

I wish you well.  

Edited August 26, 2019 by cyclinglady

[SarahRenee]

Thank you for your reply, cyclinglady. I think I'm just over thinking things. It has been frustrating going from eating whatever I want to telling my kids we can't go out to eat because of mom. It will get easier once I stop craving that papa John's pizza or five guys burger. Lol

Edited August 26, 2019 by SarahRenee

[notme]

actually, five guys offers a gluten free burger but I think they're still wrapping them in lettuce.  which is OKAY but I love red robin because they have gluten-free buns.  I buy extra buns when I eat there so I can make sandwiches at home.  my local rr is good and safe, but use the 'find me gluten free' app to see what sort of reviews your local restaurants have.   and 5 guys might have gluten-free burger buns by now, lolz it's been a minute since I ate there!

papa john's -  um, no lolz you're on your own there.  I wish I could say I have found pizza that is 'just right' yet!  I get a generic Kroger gluten free frozen pizza and 'doctor it up' with extra veggies and stuff then pile cheese on it.  the gluten eaters love it, too.  great for sportsing and last minute get togethers.  or just feeding my face lolz  

[Ennis-TX]

We have many members here that are NCGS (Non Celiac Gluten Sensitivity) I recall a few where super sensitive more so then some celiacs.

>.< Check with some places and just bring your own food, for while I would still eat out but bring my own food, or just order a few plain sides after asking to see how they were prepared. I only have one place still open I trust near here and amusingly it is English Pub but the owner has two Celiac children and they have a dedicated gluten-free kitchen.

I personally started a gluten free bakery selling at farmers market and later started chef jobs then catering starting my own business completely gluten free and paleo. LOL even invented my own quick burger bun recipe that is not only Gluten-Free but also paleo and keto....as for pizza I make my own sometimes but prefer Califlour Plant Based crust and build my own....but I also have to avoid dairy and carbs.