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Celiac or...?

Jessi Leigh

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Jessi Leigh Newbie
Jessi Leigh
Posted

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

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GFinDC Veteran
GFinDC
Posted

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 Newbie
Jessi Leigh
Posted
  • Author
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 Grand Master
cyclinglady
Posted
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 Newbie
Jessi Leigh
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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!) ?

 

 

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