Completely Overwhelmed – What Now?

[Freebird]

At his point, I am flabbergasted. I just...uh. Please bare with me. I am apologizing in advance for a long post, and plenty of grammar & spelling mistakes

 

I have been reading a lot into Celiac Disease this past year. Almost 2. I have read a lot about symptoms & signs, as well as testing, treatment & everything in between. However I am so far beyond lost that I feel entirely overwhelmed.

 

I have had symptoms of Celiac my entire life. They however have not always been consistent or as defining as others. The main issue since I was an infant was unexplained Anemia; which came with it's own slew of symptoms like severe fatigue, headaches, anxiety & depression at times. As I said my symptoms were never consistent in type or severity, so it was really hard to pinpoint what exactly was the issue. So in between the ages of 2 years and 24 years old (I am 25 now), I have seen so many types of doctors and had so many different ideas. I have even had several diagnosis' throughout my life, even though most of the diagnosis' were categorized as 'slight' or 'not severe' (like POTS and IBS). I have had a lot of different opinions from cardio, neuro, general and even psychological specialists. However they all seem to be looking in the same area which is autoimmune. The most popular suspect for me was MS which I have been tested twice for (once at age 2 with a spinal tap and again at age 16 when brain imaging). Negative. As well for Lupus. There were no answers. Well, until I bumped into Celiac Disease searching for reasons for brain fog, anxiety & extreme gastrointestinal issues.

 

So I went to my GP and I did a EMA and tTGA test. Both came back negative, and my doctor seemed to drop the celiac idea.

 

Some info:

I am a military spouse & I go to the Naval hospital. I am a proud military spouse, daughter & sister. However the hospital I am stationed near is very limited in care. Most of anything besides basic care is sent to other (civillian) areas. And with the military I have to get a referral every time I need to see a specialist. And with the fact my doctor knows nothing about autoimmune disorders, as well as the military is making cut backs & we are in the middle of furloughs, equals to I really have no idea what to do.

 

I need to know:

What is next?

I saw my GP and took a blood test. Which came back negative.

What do I ask for? A certain type of test? The biopsy? A referral to a certain specialist?

What specialist do I ask for??? I really have no idea. A Gastro? AD specialist?

 

For a while after being, in my opinion, brushed off...I decided to back off. I ate anything I wanted, I didn't look into help for my migraines, my extremely painful joints, or any of my stomach issues. I was angry. However a couple of weeks ago, after I got extremely ill from the way I have been handling my gluten intake I developed a rash. Honestly, I thought it was some kind of shave bumps considering it is on my legs and thought nothing of it. Until tonight when I decided to cave in and look into Celiac more, and I cam across  dermatitis herpetiformis and I looked at pictures. And...wow. It looks like it. Also, it concurs with the fact that it itches as well as it is more of vesicles than just bumps. And I do not believe in coincidences.

 

Some back info:

I was gluten free for almost the whole year of when looking into celiac disease. And. I. Felt. Amazing. I was a different person. For one, my severe anxiety disappeared, as well as the horrid brain fog. Not to mention my stomach...oh my goodness! I went gluten free first because it is so hard to get an appointment & referral to a specialist at the NH. I did know though that you have to be eating gluten to be tested successfully. So I ate gluten for 5 months and was EMA tested. It came back negative. However I was (and still am) positive my issues are gluten related (and actual Celiac).So I stayed on gluten for another 4 months and took the tTGA test. It was negative also.

 

Considering the rash, I am calling the NH tomorrow and getting an appointment, to get a referral, to see a dermatologist about DH. I am hoping that will give some light on what to do next. Otherwise, I am completely & utterly lost.

 

 

 

 

[kareng]

Just a clarification - were you gluten free when you did Celiac blood tests? That would make the tests useless.

[1desperateladysaved]

I think you are on to something.  It sounds as if you passed the diet response test with flying colors.  Maybe you can have your skin rash biopsied.  Oh, I think you must be eating gluten for that.  You may want to talk to people in the DH rash (sorry I can't spell it) forum and see what they think.  It may be possible to post pictures for them to help verify.  Your other symptoms sound suspicious.

 

I can't say much else, but read some more posts, keep walking, and GET BETTER.  ***

 

D

[nvsmom]

I was going to say the same thing as Karen, you must be eating gluten for a few months prior to testing or the results probably will not be accurate. As for the tests you did, the tTG IgA can miss up to 75% of celiacs and the EMA igA usually only appears positive if you have advanced damage. For example, when diagnosed with celiac I had a positive tTG IgA and EMA but after being gluten-free for a while, my tTG IgA fell to almost normal and my EMA went to negative.

 

Did you have a total serum IgA (immunoglobulin A) run? 5% of celiacs are deficient in IgA so any IgA tests run will be inaccurate.

 

For some people, the DGP tests (IgA and IgG)  are better at catching celiac disease. Some are negative in tTG and positive in DGP tests. The same can be said of the IgG based tests; there are more than a few board members who had positive tTG or DGP IgG and negative tTG or DGP IgA tests. You might to request DGP tests as well as the IgG based tTG tests. A normal doctor should be able to order those tests but a GI doctor might be of assistance if the normal doc can't help.

 

It could also be non-celiac gluten intolerance (NCGI) which has the same symptomas as celiac but no villi damage so the tTG, EMA and DGP tests will all be negative. Some doctors think the AGA (anti-gliadin antibodies) might work for both celiac disease and NCGI but it is not generally accepted. as of now, the only sure way to diagnose NCGI is a positive response to the gluten-free diet - you've done that so you are NCGI at the very least.

 

Good luck! Welcome to the board.

[Freebird]

Thank you everyone for the responses.

 

To answer your concerns, I was eating gluten again prior to the testing. The first time I was tested I ate gluten 5 months prior, and the second time almost 9 months prior. So I was glutenfied as I like to call it

 

The whole celiac disease versus NCGI makes my brain spin; and for several reasons.

 

I could not get an appt. at all this next couple of weeks to see my GP today, but I might be able to get into someone's cancel next week. So I will definitely ask about DGP tests (IgA and IgG), as well as the DH rash.

 

Thank you