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Starting To Suspect Celiac But I'm African American?

lost36

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lost36 Newbie
lost36
Posted

Hello everyone. I've been plaqued with some very strange symptoms every since feb 2011. I was going though a stressful period and started having loose stools and Diarheah. I would go out with friends and notice the stools were worse with beer. I thought maybe I was coming down with a stomach virus because I wasn't running any fevers, cough or flu like symptoms or nervous stomach. I remembered that I had two mexican burritos and brushed the bowel episodes off on that. My symptoms were watery stools at least 5 times a day, horrible smelling gas, bloating, dull stomach pains under my right rib cage and I started becoming very tired,nausea, restless, and brain fogs. My stools would alternate between greasy, floating light color{goldish) to watery.

The change in bowel habits went on for a good month and I began to get worried and went to the doc. She did a chest xray, stool test for parasites,HIV, cbc blood work and everything came back fine except she told me my Vitamin D levels were very low and I also had low testosterone. She gave me the ole IBS Dx and stress but just to be safe she sent me to an endocrinologist. The endocrinologist noticed in one of my labs from my PCP that I had raised glucose levels. He ran blood work for Thyroid and diabetes and sent me to have a MRI of my pituatary gland because of the Low T levels. Everything came back normal and my T levels had actually gone up a bit but Vit D was still low and also B12. He put me on Vit D liquid.

I went back to my PCP and told her I was still having the same problems only I had started losing muscle mass and fat, I went fom 276lbs to 265lbs (6.2 mostly muscle mass). I'm a non smoker, drink a beer on occassion and otherwise healthy. I still had a very big appetite and my job is mainly phsyical so Im sure that contributed to the weight loss also. She sent me to a GI doctor and the GI asked me my symptoms and thought it was crohns because my dad had it. I told her that I didn't feel it was that because I never saw any blood in my stools or had any severe pain or vomit. I asked her about celiac and she told me I couldn't have it because I was African american. I insisted that she give me the blood test. She gave me the blood test for celiac and a colonoscopy and both were normal only one benign polyp in my colon. I was upset with this GI doc because she didn't show any concerns

Saw A different GI and she first wanted to check for crohns and celiac and she happened to be African american. I told her what the first GI told me about celiacs and she just shook her head. Other test I've had are abdomenal/pelvic CT scan which shows Hiatal hernia and two very small benign cysts on my liver. I had ultrasounds of my liver and gall bladder, Hida scan of my gall bladder, barium xray of the small intestines and endoscopy which showed irritation in the terminal ileum and she took 4 biopsies and was neg for h pylori or celiac. She did labs again and told me every thing looked excellent except I had a low WBC which was 3.1. and B12 was still low. She didn't see any inflammation showing IBD and blood test for celiac again was normal.

I'm at the end of my rope now and my energy level has diminished a great deal since this first started. I still continue to waste away phsically. My buttocks arse wasting, arms and legs and chest have gotten much smaller. My stools now alternate between normal , loose and watery. New symtoms are exzema, coated tongue, sinus problems and phlegm in throat thats worse with dairy, fingernails grow weird, dry skin, joint and muscle pains, vision loss, and I notice a yellowish oil substance with a strange odor with my bowel movements, nerve twitches, acne on different areas of my body, high blood pressure, high glucose readings that are prediabetic,brain fog, dizzy spells, and headaches. Symptoms were worse when me and my wife would eat out almost eveyday at carrabas and pizza. Pasta is my favorite and when my wife lost her job funds were tight and we didn't eat out as much and symptoms wasn't as bad

Can someone please give me some insight on where to go from here? Doctors are of no help and I know there are false negatives with this disease. I don't want to use the fact that I am African american to rule celiac out. Im very tired and frustrated as this has been going on for a year. Does my symptoms add up to celacs? Recently I went gluten free and my stools were normal. I only ate meat rice and vegetables for a week. Yesterday my co worker gave me a pecan praline muffin and about 10 min later I started getting hot flashes and dizzy and also had a headache later that evening. That night when I got home I had explosive diarrhea and (sorry to be gross) saw the pecans from the muffins in the stool. Also ate 2 cranberry muffins this morning to see if the same thing happen and it did. Anyone please give me some suggestions.

Thank you!

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Jestgar Rising Star
Jestgar
Posted

Recently I went gluten free and my stools were normal. I only ate meat rice and vegetables for a week. Yesterday my co worker gave me a pecan praline muffin and about 10 min later I started getting hot flashes and dizzy and also had a headache later that evening. That night when I got home I had explosive diarrhea and (sorry to be gross) saw the pecans from the muffins in the stool. Also ate 2 cranberry muffins this morning to see if the same thing happen and it did. Anyone please give me some suggestions.

If you're ready to give up doctors, trying the diet is the next step. It sounds as if you've had a couple indications already.....

Welcome to the board! :)

(oh, and if another MD tells you you CAN'T have something because you're African American - ask for the studies linking skin color and that disease/disorder. Your ethnic heritage may put you at a lower risk, but my guess is that you have plenty of European mixed into your ancestry by now.

... or just look at him/her confused and say "funny...you don't LOOK Jewish..."***)

***that's an old joke pointing out that looks only correlate with looks, not other traits/religions/diets/etc

squirmingitch Veteran
squirmingitch
Posted

I am so irate at the doctors! Gee, it really WOULD be nice if African Americans were exempt from celiac disease but it just isn't true. I'm sorry you've been through so much.

I have to ditto what Jestgar says including the humor. Screw the docs & go gluten free. If everything clears up (give it time) then you have your answer. You can even do a challenge later if you want to. My bet is that if gluten-free works for you; you'll never go back to gluten to do a challenge. Who wants to put themselves through that?

Sound like you've already done a good deal of research. Keep reading this board. There is a very steep learning curve involved in going gluten-free.

Best wishes for rapid healing.

kareng Grand Master
kareng
Posted

Q: Are some groups at an even greater risk for celiac disease?

Yes. Among ethnic groups the highest prevalence is in a North African refugee population, followed by Ireland. Within populations of European origins the groups with increased risk include family members of patients with celiac disease, patients with autoimmune diseases such as Type 1 diabetes, autoimmune thyroid disease and Sj

Candicep Newbie
Candicep
Posted

I don't know much about the race statistics of the disease but you can never say never! Like someone else said, you may have quite a bit of European ancestry behind you and not even know it. The world is a big melting pot. Don't rule it out, keep your options open.

GFinDC Veteran
GFinDC
Posted

I met an African American celiac at one of our local groups meetings a while back. Your doc has bad information. The doctor's diagnosis is helpful for some people to encourage them to stick with the diet. Others don't need that. Right now there is no treatment for celiac disease except the gluten-free diet, so a diagnosis doesn't get you much in the way of helpful medical care. Some doctors medical advice is to do the gluten-free diet and to read this board. You can figure that out for yourself.

I would think trying the gluten-free diet is the right option at this point. To do it right, starting with a simple whole foods diet is the way to go. Avoid processed foods for the first month or 2. This makes it easier to avoid hidden gluten and other potential food allergens. Plus you don't have to spend all your time reading ingredients in small print on packages.

Most plain meats are safe, but avoid the ones that have added sauces or glazes. Fruits and vegetables are fine just wash them first. Dairy bothers many people at first so it might be something to eliminate for a while.

The gluten-free diet is not about weight loss but about healing your body. So eating lots of protein can be helpful. Soy is one thing I would suggest you avoid also as it causes many people problems.

If you don't see positive change after 3 months of a strictly gluten-free diet that would be a good reason to go back to the doctor and ask for more tests.

Do watch out for cross contamination via cooking pans and shared mayo, peanut butter etc. Double dipping with a gluten eater is enough to kick off the immune reaction. So you should have your own condiments marked with a big red X or something to indicate they aren't for gluten eaters use.

The better you are at avoiding gluten the sooner your body can heal. The immune system starts producing antibodies quickly but doesn't stop making them quickly. So a little bit of CC can kick off a reaction that lasts for weeks.

lost36 Newbie
lost36
Posted
  • Author

Thanks everyone for the replies and helpful info. I'm glad it's not just a racial thing and other african americans do suffer with this. I'm sure I have some European ancestry somewhere especially on my dads side of the family. The weight and muscle loss is the thing that scares me because I fear that the doctors have missed something more serious like cancer. It's hard to go gluten free because i'm so busy with two jobs and everything my wife has in the fridge has gluten.

I'm also thinking I could be dealing with bacteria infection in my small intestines because my symptoms mimic that also. I remember when I was on three different antibiotics back to back for having two teeth pulled. I didn't finish a couple of courses before starting the other and had awful watery diarrhea at least 10 times a day. I'm taking olive leaf extract and probiotics for now until I see my doctor soon. I think i'm going to ask him for the antibiotic Riflaxin targeted strictly for SIBO. Also I'll remain gluten free for three months to see if that helps also.

Thanks again everyone.

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