Celiac or...?

[Jessi Leigh]

I am new to the group and have been investigating many different ideas to try to figure out what is going on with me.  I was "unofficially" diagnosed celiac 6 years ago.  I was having constant migraines, fatigue, some joint pain,  stomach pain, diarrhea 4-5 xs per week, rash on back of arms, vit B and D deficiencies, etc.  I had tried a gluten-free diet as part of an elimination diet for migraines.  It helped significantly and within a month, most of my other symptoms vanished.  My Dr at the time felt I hit enough markers to say celiac- I wasn't willing to go back to a regular diet to do the antibody test and did not have very good coverage nor wanted to do biopsies for additional confirmation.  Basically, if it looks like a duck, quacks like a duck...

Last year I started having strange pains in my feet and extreme weakness and pain in my hands.  I am (was) a potter and a sculpture teacher, so I attributed the foot pain to standing all day, hands and shoulder pain from overworking in class, and fatigue to it being the end of the year.  As summer wore on, I got worse instead of better.  I was completely exhausted.  I couldn't work out, go hiking, or even manage to see friends.  Walking the dog exhausted me.  I finally broke down and made an appt with a Dr.  I had moved since I last had a GP, so I was starting all over.  I mentioned celiac to him and told him my story- he laughed and said it is too much of a fad and I never could have been diagnosed with pernicious anemia ( I was by my old Dr).  I was referred to an RA.

My RA did tests for RA, Lyme, Lupus and a few more.  Everything was coming up peachy.  He put me on prednisone because he didn't know what else to do.  I felt great for a few days, then the taper started and a whole new set of symptoms.  He said that because prednisone helped with the pain it was just seronegative RA.  I was put on plaquenil.  Symptoms intensified and 1/2 my hair fell out.  I had to give up teaching sculpture because it was too physical and go back to drawing and painting.  no improvement 6 months later- I started sulfsalazine.  He was pushing for methotrexate, but I was never comfortable starting the medication.  After a month I decided to stop all the meds and am gradually feeling a bit better.  

I am wondering 2 things- either the Lyme test was a false negative or I had an extreme flare from celiac.  I am truly very careful with my diet, but I am looking into how I do everything again.  I know when I do accidentally ingest gluten I have arthritic like flares in my joints- but that usually only lasts a day or so.  I also have severe stomach issues from cramping to diarrhea.  The only other thing I can put in as a variable is my boyfriend- now husband- moved in and he is on a regular diet.  Could I have been having all of this from cross contamination in my kitchen?  It seems a little severe for that, but I am dissecting this as much as I can. 

I know this was a bit longwinded, but I am at a loss.

Thanks- Jessi

[GFinDC]

Hi Jessi,

Did the new doc test you for gliaden antibodies?  It would be wise to do that in case you are getting cross contamination.

 

[Jessi Leigh]

25 minutes ago, GFinDC said:

Hi Jessi,

Did the new doc test you for gliaden antibodies?  It would be wise to do that in case you are getting cross contamination.

 

The GP that I had thinks celiac is a fad.  His words.  I am changing, but it was a few month wait to get into the Dr I wanted.  When I see her in 2 weeks I will ask her about it.  I know she is supportive from a friend who goes to her and is either celiac/gluten sensitive.  I was under the impression that unless I was consuming enough gluten that the tests wouldn't show anything?  Could a slight, unaware consumption trigger enough antibodies?

[cyclinglady]

14 minutes ago, Jessi Leigh said:

The GP that I had thinks celiac is a fad.  His words.  I am changing, but it was a few month wait to get into the Dr I wanted.  When I see her in 2 weeks I will ask her about it.  I know she is supportive from a friend who goes to her and is either celiac/gluten sensitive.  I was under the impression that unless I was consuming enough gluten that the tests wouldn't show anything?  Could a slight, unaware consumption trigger enough antibodies?

Yes, it can.  I was glutened last July.  I have no clue as to what zapped me either.  Six weeks after the glutening, my antibodies were higher than when I was diagnosed.  So, it is possible.  

[Jessi Leigh]

At this point I am thinking anything is possible.  The flare was just so extreme and lasted several months so I never considered celiac as the root.  Would a flare up show on any of the other antibody tests or bloodwork or is only the Gliadin IgA test an indicator for celiac?  I think I've had about 20 tests or so for RA/lupus antibodies and immune responses.

 

[cyclinglady]

It took me 3 months to heal and another 3 to regain lost weight.  I honestly do not know what glutened me.  I suspect two products and they might have been mis-labeled or cross contaminated.  For all I know, it could have been weeks of gluten contamination.  My original symptom was anemia.  No tummy issues that I was aware of.  This time, I had vomiting, ab pain, bloating, rashes, itching, hives, all kinds of crazy things.  I became lactose intolerant again and picked up a histamine intolerance too.  Eventually, the hives and rashes  (not DH a celiac rash) went away (about the time I regained weight).  The histamine and lactose intolerance resolved as well. 

so, the thing is you could be having a celiac flare-up.  Only a blood test will tell.  

As far as the  celiac blood panel  goes, I get the complete one as I test negative to all but the DGP iGA, which is really weird!  My GP/PCP doctor says I am special (and her most allergic patient!) ?