An Unexpected Celiac Test Revealed Positive Results

[amyschicks]

Hi Everyone! 

I'm so lost and confused. I'm a 28yo female that has had pain and digestive issues my whole life. In college and for two years after college I saw two different GI doctors. I event had a colonoscopy to check for Crohns and I came back fine. My doctors have always just told me to use more Miralax to stay regular. My cramps are so bad that I have a hard time staying focused at work and take Naproxen regularly just to get through the day. I've seen two different gynos because I thought maybe the pain could be pelvic to do with my periods but they can be throughout the month. I'm told it's just bad period pain and to keep taking pain meds. 

Last month I went to a doctor who sat with me and talked through all my aches and pains. I also have migraines, rashes, Raynaud's Disease, very deficient vit. D, fatigue, kidney stones. She suggested I be tested for Celiac. It definitely blew my mind since I had spent years with two different GIs and no one even tested me for anything like this. 

Blood tests came back as 'weak positive' for DGP - IPA. My GP that did so well to test me for this suggested going gluten free or FODMAP diet. I feel like getting to the root of the cause FINALLY and doing an endoscopy before going gluten free would be best but I would hate to go through it for nothing and being so disappointed if it led me to another dead end. 

Has anyone else have struggled with pain and lack of a definite result? What did you do? 

DEAMIDATED GLIADIN AB, IGG  2.4 U/ML ( Negative <20)

DEAMIDATED GLIADIN AB, IGA  27.8 U/ML (Weak positive 20-30)

TTG IgA <1.2 U/ML (Negative <4.0)

TTG IgG <1.2 U/ML (Negative <6.0)

[cyclinglady]

2 hours ago, amyschicks said:

Hi Everyone! 

I'm so lost and confused. I'm a 28yo female that has had pain and digestive issues my whole life. In college and for two years after college I saw two different GI doctors. I event had a colonoscopy to check for Crohns and I came back fine. My doctors have always just told me to use more Miralax to stay regular. My cramps are so bad that I have a hard time staying focused at work and take Naproxen regularly just to get through the day. I've seen two different gynos because I thought maybe the pain could be pelvic to do with my periods but they can be throughout the month. I'm told it's just bad period pain and to keep taking pain meds. 

Last month I went to a doctor who sat with me and talked through all my aches and pains. I also have migraines, rashes, Raynaud's Disease, very deficient vit. D, fatigue, kidney stones. She suggested I be tested for Celiac. It definitely blew my mind since I had spent years with two different GIs and no one even tested me for anything like this. 

Blood tests came back as 'weak positive' for DGP - IPA. My GP that did so well to test me for this suggested going gluten free or FODMAP diet. I feel like getting to the root of the cause FINALLY and doing an endoscopy before going gluten free would be best but I would hate to go through it for nothing and being so disappointed if it led me to another dead end. 

Has anyone else have struggled with pain and lack of a definite result? What did you do? 

DEAMIDATED GLIADIN AB, IGG  2.4 U/ML ( Negative <20)

DEAMIDATED GLIADIN AB, IGA  27.8 U/ML (Weak positive 20-30)

TTG IgA <1.2 U/ML (Negative <4.0)

TTG IgG <1.2 U/ML (Negative <6.0)

Welcome! 

Maybe the two GIs did test you for celiac disease.  There was period of time when I was diagnosed (5 years ago), that most doctors were just ordering the TTG tests only.  They thought they were superior to the DGP tests.  Problem is that they found that they did not catch all celiacs.  You are lucky your GP ordered the both tests!

A positive is a positive and should be followed up with an endoscopy.  The same thing happened to me.  I tested positive to ONLY the DGP IgA even in follow-up testing, yet I had some pretty severe damage to my small intestine.  If you have insurance, I would go forward with the endoscopy.   But, if your GP is willing to trial the gluten-free diet and give you a firm diagnosis, that might work too.  Get your thyroid checked too as autoimmune disorders tend to cluster and you already have those cold fingers and feet!  

Why a diagnosis?  If you are planning on having kids, keep in mind that this is one AI disorder that is definitely genetic.  You children should be screening periodically even if they have no symptoms or theirs differ from yours.  

 

[amyschicks]

Thanks for responding! A diagnosis would simply be for my peace of mind. While I'm waiting my next step, there are days that I feel fine. No symptoms of pain or anything different (different to me). When the pain comes then it's terrible and all I want is sleep and to lay down. I just don't feel normal and I feel like my body is telling me that something is wrong.. 

 

[Posterboy]

6 hours ago, amyschicks said:

My doctors have always just told me to use more Miralax to stay regular. My cramps are so bad that I have a hard time staying focused at work and take Naproxen regularly just to get through the day.

Amyschicks,

Have you considered your cramps could be from the Miralax itself.

The cramps you describe are a known side effect of Miralax.

You can google it for yourself but  here is a link on Miralax's side effects.

Open Original Shared Link

they say to tell your doctor but they forget sometimes too that fibers can cause cramping (especially in the first two weeks of use) as your body adjusts . . any thing longer than that might be justification for looking for a gentler fiber on your stomach.

quoting

"Tell your doctor if you experience serious side effects of MiraLAX including severe or bloody Open Original Shared Link, bleeding from your rectum, blood in your stools, or severe and worsening stomach pain, cramping, or bloating."

I would cycle off your laxative.

I always took a gentle stool softner like ducloax or pericolace.

Magnesium Citrate works well as a natural laxative.

200mg with each meal will keep most people moving along nicely.

I would be suprised if Ennis_tx doesn't get on here soon and tell you about Miralax himself.  I think he said he had read how Miralax had some longer term bad side effects.

I am not sure if he was talking about these side effects or another.

 I had a similar reaction to metamucil (pysllium) and often wonder how it got on the market my pains were so severe I thought I was going to die (not literallY) but the pain/cramps caused be to bow over in pain.

And had I not been alert that I had just started the "miracle" fiber which I was taking for my healthy ( I might not of been aware) GI/regular movements then I might not have thought my supplemental fiber was the cause of the problem/to blame.  And continued taking Psyllium only excasperating my condition.

When I stopped the metamucil the intense stomach cramps went away.

I never tried Miralax for the same reason(s) that I thought it would effect me the same way Metamucil did.

I hope this is helpful.

****this is not medical advice but  I have learned you have to pick your supplemental fibers carefully.

For me a stool softner was  enough to help my constipation till I found Magnesium Citrate then I found I didn't need colace any longer.

Again I hope this is helpful but cycling off of Miralax might just help the cramps you have been having.

I know cycling off my fiber helped my cramps from then on I just took Magnesium Citrate.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[amyschicks]

12 hours ago, Posterboy said:

Have you considered your cramps could be from the Miralax itself.

The cramps you describe are a known side effect of Miralax.

I do not like taking anything unnatural that my body does not need. I've tried to eat healthier and suppliment my fiber through my foods. I'm no longer taking miralax but still not regular. 

You could say that I'm not the best patient.