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Hello everyone,

I've been a lurker around here for over a year now, and I finally decided to join and introduce myself.

My story is long, so I won't bore everyone with ALL of the details in this post, as I fear it would take forever to read (and write, for that matter). So, for now, suffice it to say that I have had the "classic" GI symptoms (and other symptoms now that I think about it) pretty much all my life (I will be 30 years old this year... eeek!). I had my gallbladder removed when I was 24 (my dad also had is removed when he was the same age), and I have had at least one confirmed (via testing and subsequent hospital stay) case of pancreatitis. However, I think I've had bouts of it off and on, as there were times when I felt exactly the same as I did when I was hospitalized for it, however, I just couldn't bring myself to go to the hospital AGAIN just to be given a "GI cocktail" (I would wager big bucks that more than a few of you here on this forum are familiar with what that is) and sent home.

I'm so very thankful for my doctor (bless her), who actually LISTENED to me when I told her of all my troubles last year. By the time I talked to her about the possibility of celiac, I had already been on a gluten-free trial that I started on my own, and told her that I was feeling better. She said she would do the blood test, but encouraged me to listen to my body, no matter the results of the test. She said that it sounded like I had "found my answer" (her words) and that I should stick with being gluten-free, no matter what the results of the test.

Well, the test came back negative and I never asked for a biopsy or any further testing. My doctor also said that she didn't really think it was necessary because I had such a positive reaction from the diet.

All of this was about this time last year, and in the year that has passed, I started eating gluten again, and of course went back to feeling bad again (I would say that I may be worse now).

My family history is very "supportive" of at least some gluten intolerance, if not celiac. On my dad's side: dad, 3 of his siblings, his mother, and his nephew (my cousin) have all had their gallbladders removed, both of his parents and his 2 sisters died from complications from diabetes/cancer, my dad is "pre-diabetic" (whatever that means), his brother (my uncle) is also diabetic. Most of my dad's side has always had some sort of "stomach issues", whether it was just being "gassy", or prone to indigestion, stomachaches, etc. On my mom's side: her dad (my grandfather) died from Non-hodgkins lymphoma, her mother (my grandmother) always had some sort of stomach issues and there were a lot of foods that she just couldn't tolerate (she passed away from complications from high blood pressure/aneurism), my cousin (who I was very, very close with... we were like sisters) passed away a couple years ago at the age of 30 from complications from Lupus (she was diagnosed in college). Also on my mom's side, (and dad's side now that I think about it) there have been issues with lactose intolerance.

For me, I have asthma, seasonal allergies, eczema, some NEW rash that just came up on my leg a few weeks ago. I'm borderline anemic (I'm usually at the very LOW end of the "normal" range, or I'm just under normal... you know, enough for them to say, "oh, it must have just been a fluke..."). Whenever I have been hospitalized or in the ER, I was told that I had some random nutrient deficiency that they couldn't figure out the cause of, but again, was probably just a "fluke" or due to my having been vomiting or suffering from "D", etc. Of course, you can tell by the family history that I just gave that I am VERY much pre-disposed to diabetes. Also, recently, I had some blood work done at the emergency room (went because I NOW have some issue with my parotid gland... a WHOLE 'nother story...) and had a fever and had to get antibiotics because it was swollen, etc, and my blood work was abnormal... my platelet count was EXTREMELY low, among other abnormalities with the results.

Another thing about me... I'm Black. Well, among other things, really. Both sides of my family are very "mixed" with both Native American and Caucasian, as well as black. From what I've read, it is EXTREMELY RARE for African-Americans to have celiac disease, so that is another hinderance to my coming to terms with and understanding what may be wrong with me.

I'm sorry if this all sounds a bit disjointed, I'm having a hard time putting all of my thoughts into a coherent form (and I'm usually very good with written words). This post turned out to be longer than I intended... :P

Anyway, thanks for reading. I will post more in days to come. If anyone has any questions, feel free to ask. :D

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I was a lurker too for 3 months and just posted my story over the 4th of July. This is a wonderful place to find answers and new friends. It's nice you found a Dr. who will listen to you.

Yellow Rose

27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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It sounds like you really need to be gluten free. Just because your primary heritage may be black doesn't mean you can't have celiac/gluten intolerance. I believe the asians are the extremely rare ones, unless they too have mixed blood. Somehow I think most people do these days.

Anyway, if you want to spend the money on more testing you can. It sounds like you may need something in writing to stay on the diet.

Try another blood test if you are still consuming gluten. If that's negative then you could do the gene test through enterolab to see if you have a known celiac gene. Keep in mind you may not have a known celiac gene, and that wouldn't mean that you shouldn't be gluten free.

I highly suggest going gluten free again and staying gluten free. You may need to cut out dairy for 6 months as well. Also, if you have scratched nonstick cookware and plastic cookware/utensils they would need to be replaced to keep yourself from getting sick from cross contamination.


Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)

The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Welcome to this forum, I am glad you decided to post. I agree with what Andrea has said. Let us know if you have any questions and how we might be able to help you.

One thing, I am delighted that you have this supportive doctor. There are so many here who haven't had that. If you consider more diagnostics, perhaps talk with a good allergist that is knowledgeable about celiac. There seems to be some who are allergic to gluten, rather than have celiac disease. With a food intolerance, you may be able to tolerate some level of the food in your diet after a lengthly period away from it totally. With celiac that is not the case.

I think that perhaps you know yourself the best, and what you need so that you can decide to make gluten-free a lifestyle. It sounds like that needs to happen.

4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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