Questions about testing

[Dancing Queen YCD]

I suspect I have celiac disease based on my symptoms and history  I got really scared about reading about it I stopped eating gluten  two days ago and I have read is not a good idea.  I will probably go back to gluten tomorrow but I'm scared. That's how confident I feel about having celiac disease

I have had psoriasis for years and it is possible I also I have DH., I'm not sure though. I also have hypothyroidism.  I have also had major acid reflux episodes in the past. I also took accutane for 4 months more than 10 years ago which some claim it can intensify your existing problems. I was recently diagnosed with anemia and was told to eat a rich iron diet to get tested again.  After that month my ferritin came out as 7.  I checked my old labs and noticed I have been anemic for at least 3 years but my previous Doctor never said anything  

My current doctor thinks I must be losing blood but based on my previous labs I think I have a chronic condition.  I think I might have an absortion problem and probably should get an endoscopy. I don't know if the doctor will agree, sometimes doctors ignore you.  I wonder if I indeed have absorption problems will I still need to go back to eating wheat for the damage in my intestine to show in an endoscopy?  I think based on my symptoms I should probably be referred to a gastroenterologist right away , not even bother with a blood test  

 

 

[GFinDC]

Hi DancingQueenYCD,

Yes, you should keep eating at least some gluten every day until all the celiac testing is finished.  The University of Chicago Celiac center says about 1/2 slice of bread daily is adequate.  You should get both the blood antibody tests done and an endoscopy.  They are both part of the diagnosis.

You don't need to be scared about having celiac disease.  It does take some time to learn a new way of eating but it is a good change.  You should end up eating better, more nutritious foods as a result.  That's a good thing.  And whatever damage you have should mostly heal over time if you are careful and avoid gluten.  It may take months to years though.  Generally speaking people have improved health after going gluten-free, although the symptoms don't stop right away.

Welcome to the forum !

[Dancing Queen YCD]

Thank you GFinDC

 

Yes I'm mostly scared of doing additional damage to my intestines. I haven't found eating without gluten that difficult except that I feel I can't trust most processed food and restaurants. Fortunately I prepare most of my meals and have never been a fan of pasta.

I had an endoscopy in the past so that part doesn't scare me either.  I will bring my old blood tests to my new doctor, hopefully he will refer me to a gastroenterologist .  At least this doctor didn't ignore my anemia, it is also my fault for not checking my lab results years ago  

 

[Dancing Queen YCD]

Well here's an update since I hate when new users just disappear LOL.

The tests came back negative.  My doctor ordered also a H. Pyroli test and I came back positive so what I probably have is really bad acid reflux and the hypothyriodism  is causing the rest of the problems (psoriasis, other skin disorders, anemia and neurological symptoms)

I will see a gastroenterologist in a week. My guess is they might order an endoscopy to rule out a stomach ulcer. 

Excuse me if I write this wrong but the test say ttG-IgA was 1 and  immunoglobulin 280.

 I will probably try a gluten free diet and take multivitamins after I'm done with testing and see if it helps my skin conditions but it really sounds like I don't have celiac disease.

 

 

 

 

 

[GFinDC]

Hi DC

Thanks for updating us.  It looks like they only did the initial screening test for celiac disease, the ttg IgA test.  There are other tests including DGP IgA and DGP IgG that would be worth asking for also.  Not everyone tests well on every test.  They may call that set of tests a celiac panel.  Another gotcha is that people with DH sometimes don't test well.  In DH the antibodies are concentrated in the skin instead of the blood.  So they test for DH by taking a small skin sample from next to a lesion.  Having DH means you have celiac disease.

Did they explain the cause of your hypothyroidism?  Hashimoto;s Thyroiditis is a condition that slowly destroys the thyroid gland.  Hashimoto's is more likely with celiac disease,  They can test for Hashimoto's by blood tests for antibodies.

Celiac testing isn't perfect right now.   None of the tests are 100% guaranteed to catch every person with celiac.  There is a small percentage of people who don't fit the mold and the test don't catch them,

 

[Dancing Queen YCD]

No I don't know the cause of my hypothyroidism. My guess is that is an autoimmune disease since I never had an accident or been exposed to radiation more than the  average person.  Also because of the psoriasis since autoimmune diseases tend to come in bundles. My father had his thyroid removed so it might be hereditary. 

I will see how it goes with the gastroenterologist.  If he doesn't order additional tests I can always see a dermatologist  since I have some psoriasis breakouts and suggest to be tested for DH 

 

 

[GFinDC]

Ok, diagnosis mystery on the thyroid then.  Hashimoto's is an autoimmune condition.  They test for TPO antibodies to diagnose it.  

The DH section of the forum is full of lots of info on it.  Pretty scary stuff to us non-DH'ers tho!

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

[cyclinglady]

Hashimoto's Thyroiditis, Ferritin: 2, Always NEGATIVE any TTG tests, Positive only to DGP IgA, Marsh Stage IIIB found on biopsies.   That is me.  My anemia was blamed on Thalassemia (genetic anemia) and just being a woman.  Luckily, i went to a GI for a routine colonoscopy (yep, over 50).  He ran the entire celiac blood panel and not just the screening TTG.  Got one positive on the DGP IgA, yet my gut was ravaged.  

I am saying that just because you had a negative on the TTG does not rule out celiac disease.  Why take advice from a stranger?  Read what expert GI's have published:

Open Original Shared Link

Note that is said that if the TTg is negative, some 10% of celiacs can test negative to the TTG.  If celiac is suspected, they recommend further testing (Mayo Clinic).  

Open Original Shared Link

(Why do I provide links to the University of Chicago so much?  It is because their site is so well written!)

Finally, keep eating gluten until you are satisfied with your diagnosis.  All celiac testing except genetic requires a person to be on a gluten diet for 8 to 12 weeks (blood tests).