Extreme Symptoms But Negative Ttg Iga, Not Sure What's Next

[ncjess]

The past few months have been a wild journey -- I wasn't feeling well before, but then suddenly in March I started getting unbelievably terrible migraines -- the first one lasted 2 weeks, and then they began to be triggered on top of each other so they were indistinguishable. Part of the 'aura' was that I'd lose all the feeling on my right side and lose motor control of my hand and my foot.. some days it was impossible to hold a pencil or type with my right hand... on top of that - nausea, GI issues, extreme fatigue...

 

Doctors have gone to two extremes: from 'just stress' to 'MS'. 2 MRI's later, they can't find MS.. and out of desperation I started trying to find something that would help.. I realized that I was eating a ton of greek yogurt right before this started, so I cut out all dairy and it was like someone immediately turned the volume down. The migraines and other symptoms were there, but only about half as bad.. so after a week or so I cut out gluten, and it has been the *only* thing that has kept them under control. Medicine hasn't helped at all. They've run tons of tests and the only thing that's shown up is vitamin B and D deficiencies.

 

The doctors have been incredibly skeptical so I tried eating bread (spaghetti, a cookie, milk in my coffee...) several times over the past 2 months and each time, I lose all the feeling again within an hour and have a terrible headache for 3 days...

 

Finally, just so I'd stop asking for it, I think, they ran a ttg IGA test, and it came back definitively negative. Total IGA shows I'm not IGA deficient.

 

I'm shocked and incredibly discouraged. These are not vague or hard to track symptoms.. I eat gluten and I'm sick in bed for days. I know there are other celiac tests that can be run, but it took a great deal of convincing just to get this doctor to run the one he did. I feel like this was my one shot at 'proving' what's been going on, and now I'm back to square 1 with the doctors.

 

Of course, the solution is just to stay away from gluten and feel better, but I can't help but want some sort of 'proof' that this is what's going on, especially with the attitude I've encountered from doctors and friends who are convinced that if you aren't celiac you don't have a problem with gluten.

 

Just incredibly discouraged, and not sure if there's a next step from here?

 

 

-Jess

[kareng]

Sounds like you were mostly gluten free for a few months when the tests were run?  If that is the case, the tests don't mean much except that you aren't consuming gluten (if you are Celiac).  You must be eating gluten to get positive blood tests.

[BlessedMommy]

I wouldn't worry about what other people think. I can never confirm a diagnosis of anything due to stroke risk from headaches (challenging gluten is way too dangerous for me), and I just eat 100% gluten free and people can think what they may. They don't have to live in my life or pay the hospital bills if I go to the hospital. 

 

I agree that the tests may have been falsely negative. You could either try to do a gluten challenge or you could commit to simply living gluten free.

 

Best wishes in whatever you decide to do! 

[nvsmom]

Yes, the tTG IgA requires that for 8-12 weeks prior to testing you eat at least one slice of bread per day (or equivalent). Not doing that could cause a false negative.

 

Also, the sensitivity of the tTG IgA is somewhere between 75-95%, and that means that it will miss 5-25% of all celiacs. You could be one of those.  There are more tests out there for celiac disease, and if you have them run, and you have celiac disease, it may catch the disease. The other tests are: tTG IgG, DGP IgA, DGP IgG, EMA IgA (but this is usually negative if the tTG IgA is negative), and the older AGA IgA and AGA IgG.

 

You could also have non-celiac gluten sensitivity (NCGS).   Those with NCGS have almost all the same symptoms as a celiac but the disorder is not picked up by blood tests (except occassionally the AGA tests but they miss most cases).  NCGS is not a minor disorder but makes one feel every bit as bad as a celiac - and it's much more common than celiac disease.  If you are having a positive response to the gluten-free diet, you have proven that you have NCGS at the very least, and a positive reaction to the gluten-free diet is how NCGS is presently diagnosed.

 

Best wishes with whatever you decide to do!

[SMRI]

Have you investigated other causes along with food issues besides MS?