Still on the road to diagnosis…maybe

My last post dealt with my journey thus far in figuring out if I have celiac disease.  A short recap if you did not read my previous post, or follow my blog — since 2012, I have added and then removed gluten (and gluten containing products/foods) from my diet.  In my self-testing, I found my health DRASTICALLY improved.  I was unable to smell and after being gluten free for 4 months I was able to maintain my sense of smell without medication!  Then, I had myself tested for the genetic marker for celiac and I am positive for it.  The last step for official medical diagnosis is to have an upper endoscopy done and if the villa are flattened I have celiac disease…officially.

Here’s the rub.  I’ve been gluten-free for 19 months.  I feel well!  Alive.  Creative.  Vital.  However, I would have to purposefully eat gluten for a whole month before having the upper endoscopy done.  This is called the gluten challenge.  While I was not happy about it, I decided to go through with it as I wanted to ‘prove’ I had celiac disease.

The month came and went with bad tummy aches, digestive issues, a rash on the backs of my hands and general malaise.  However, nowhere near as bad as when I was in the throes of my gluten eating days (ahh, the bliss of ignorance!).

I even eat a bagel with cream cheese a couple of days prior to my test.

The result?  Mixed.

Part of my gut shows absolutely nothing wrong; it’s healthy and normal villa.  The other part (in the duodenum) shows flattened villa — an active case of duodenal irritation.  This is one of the ways in which celiac disease appears, as chronic duodenal irritation.

In my case, since some of the biopsied areas were normal the result is I do not have celiac disease.  Fun.  So, me removing gluten from my diet and enjoying a complete reversal of a decades long issue mean nothing?  The fact that I carry the genetic marker for celiac also means nothing?  Well, okay.

Here’s one more factoid.  I also happen to be Caribbean-American (read Black).  The incidence of celiac disease in the African-American (Black) community is quite small; infinitessmial really.  So, generally, Blacks are not tested for celiac disease.  It’s not even brought to the table as a possibility.

Let’s back up a bit.  My GI doctor ordered very specific blood tests in the early stages of working with me.  In essence, through a process of elimination my GI doctor tried to rule out celiac disease through this series of blood tests.  He tested my nutrient levels, blood levels and everything in between.

My blood count levels, specifically my white and red blood cell counts, were not as expected.  He ordered a Thalassemia test (aka Mediterranean anemia).  The lab sent back a diabetes test.  A bit annoyed, my GI doctor took more blood and requested the Thalassemia test again.  Do you know what?  The lab sent back another diabetes test.

Given what I’ve told you already I’m sure you can see what conclusion the lab decided upon.

Since this happened prior to my upper endoscopy exam, it make me wonder if the same factors were in play where the assumption is that I shouldn’t/couldn’t have these illnesses due to my ethnicity.

This leaves me in a pickle as to what to do moving forward.  Do I drop the whole thing?  Let the medical establishment tell me I can’t have celiac disease and just follow the gluten free diet and reap the benefits of good health on my own?  Or, do I push and get diagnosed properly and go on to help other people who look like me?

My reasoning is simple, if I am diagnosed with celiac disease then others who look like me may have more access to getting tested due to increased awareness.  I say this because I will blog about it and be an advocate of people of color being tested if they have the symptoms of celiac disease.  The color of one’s skin should not determine what illnesses we are tested for; that thinking is archaic.

white boy_aint nobody got time for that

I’ll keep you posted on the fun goings-on with my gluten-free journey.

Ta-ta for now,

NB

 

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5 thoughts on “Still on the road to diagnosis…maybe

  1. Hey, please ask doctors to test to rule out Hashimoto Thyroiditis and (D.H.) dermatitis herpetiformis. If they have not done a specific blood test for Celiac ask for it, even if they say your ancestry blocks you. There are cases of Celiac in all types. Celiac does not care where your family history comes from, nor D.H. http://www.ncbi.nlm.nih.gov/pubmed/2312829 and http://ghr.nlm.nih.gov/condition/celiac-disease and http://www.bing.com/videos/search?q=celiac+disease+and+black+people&qpvt=Celiac+Disease+and+black+people&FORM=VDRE#view=detail&mid=DCB969A4C995ADA097C2DCB969A4C995ADA097C2

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  2. It’s crazy that there is still so much bias in the medical community. Knowingly or ignorantly refusing to consider the possibility that a certain ethnic group could have a specific disease is a form of prejudice with potentially dire effects. I think you should definitely push for an official diagnosis. Your medical history has a way of following you, which is a good thing because it can really help in future situations. (i.e. ER visits, process of elimination when treating or looking for underlying causes of other illnesses, etc) I went over a decade before I was diagnosed with rosacea (skin condition) primarily because I’m black and it’s so rare in my ethnicity. It really effected my self esteem, and I know I would have been diagnosed and treated sooner (avoiding scarring and unnecessary aggravation) if I was not black. So don’t give up! I hate that you had to get back on gluten for a month to no avail.

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    • Hi Faith! While it was aggravating to go through all of this ‘for nothing’ it actually was not without purpose. It brought to my awareness that you must fight for yourself and educate yourself as much as possible. You cannot — and should not! — depend upon anyone, not even your doctors, to help you on your journey towards health.

      I am glad you were finally diagnosed! Once you have an answer it makes everything else so clear.

      Thanks for your comment! I appreciate it. And yes, bias in the medical arena is something we should not have to contend with but alas, what are we to do but do what we must?

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  3. Excellent post, Rochelle. Frustrating for you too. I’m glad your dietary change has helped make you feel all the good things you do. Tough decision. As a recently retired RN, I can say that medicine is definitely NOT an exact science.

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