Am I Celiac?

[jamrock]

In March 2006 I got very ill with some kind of virus which caused shortness of breath I was hospitalized for seven days, doctors thought pnuemonia, then PE then last of all asthma ( i am not asthmatic). They really werent sure what was wrong my ESR was 90 platelets eleveted and I was also anaemic. Things settled after then in June i became ill again this time it started with my feet swollen, then the next week came the skin rashes like allergy, then other parts of my body, fingers, face, hands, feet became swollen sometimes with rash sometimes without. I would get up each day wondering what area in my body would be swollen, then I had this constant shortness of breath and swelling in my stomach especially just after eating, by this I was hopitalized two more times. As the weeks progressed was now feeling pain in my bones, back joints, sometimes cramping im my stomach. As you can imagine I have seem numerous specilaists, rhuemotologist, haematologist, orthopedic surgeons, internist, herbalist, allergist and the list goes on.They even tried sending me to a psychiatrist (smile).

I did so much blood work, lupus test x4, xray, lung scan heart scan the works most came okay but the blood work showed that something was wrong, some autoimmune problem but which one, the doctors said that my body was fighting something.

Well i did the skin allergy test I reacted to almost everything I was now on a basic diet of mutton as the only meat and yam, breadfruit ( i am from the caribbean) but they were really "blaah" foods. I couldn't keep up with that anymore so I started trying some regular food. I started to get sick as you can imagine. I now said to myself okay this is definately a food allergy but which food? that was the question for days so I started to read and check the internet that is when i met the word gluten. I said okay let me try this gluten free thing for a couple of days that. Those couple of days is the best I felt in 10 months. But of course being the festive season and all I decided not to pass on the fruit cake as I wasn't too sure about this gluten thing anyway, needless to say my fingers and feet were swollen and so was my stomach.

I now wondered to myself after being ill for so many months and seen over 30 doctors locally and abroad why has no one made the connection between my shortness of breath, swelling in all parts of my body, rashes, bloating, joint and bone pains THAT I COULD BE ALLERGIC TO GLUTEN.

I printed some info on celiac disease and took it to my GP yesterday who said it is a possibly but it is rarely in black people. As I am not an expert at genes I requested a referal to a Gastroentrolgist where to get the necesaary test done.

I believe that this gluten allergy could be the answer to my problems. Guys what do you think?

[emcmaster]

Hi there & welcome!

If you are feeling better without gluten, I'd say it is pretty certain that you have some sort of problem with gluten, whether it is celiac or gluten intolerance (some people believe they are the same thing - I'm one of them). I understand your frustration with doctors not knowing what it was. I'm glad you found it out on your own. Like you, I discovered it on my own, too.

The next step is whether you really want a diagnosis (with testing) or if you are content knowing that you are probably a celiac and need to stay away from gluten for life. Your doctor will probably be helpful.

Good luck!

[jamrock]

Hi there & welcome!

If you are feeling better without gluten, I'd say it is pretty certain that you have some sort of problem with gluten, whether it is celiac or gluten intolerance (some people believe they are the same thing - I'm one of them). I understand your frustration with doctors not knowing what it was. I'm glad you found it out on your own. Like you, I discovered it on my own, too.

The next step is whether you really want a diagnosis (with testing) or if you are content knowing that you are probably a celiac and need to stay away from gluten for life. Your doctor will probably be helpful.

Good luck!

Thanks for such a prompt response

I believe i will go ahead with the testing as I have four childen and my first a boy is 12 but pretty short for his age I am now concerned for him

[Jestgar]

Hi Jamrock,

not sure what your ancestry is, but here is a study done in the US on "African-Americans" (which could be from anywhere) showing that Celiac does exist in the black population. Keep in mind that many of these people may have European genes as well, so not a perfect study.

Dig Dis Sci. 2006 May;51(5):1012-5. Epub 2006 Apr 27.

Celiac disease in African-Americans.

* Brar P,* Lee AR,* Lewis SK,* Bhagat G,* Green PH.

Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York, USA.

Celiac disease is generally under diagnosed in the United States and it is unclear whether the disease is encountered in ethnic minorities. Our purpose is to describe a case series of African-American patients with celiac disease. Nine (1.3%) African-American patients with celiac disease were identified from a prospectively generated database of 700 patients with biopsy proven celiac disease and seen between 1981 and 2004. Females predominated, with seven, compared to two males. Diarrhea was the presentation in only two patients, while three presented with iron deficiency anemia. One third had at least one autoimmune disease. Compliance with a gluten-free diet, the only medical therapy of this disease, was poor. Only four patients adhered strictly to the diet. Celiac disease occurs in African-Americans and may well be underdiagnosed. Special attention needs to be given to methods that encourage adherence to the diet in minority groups.

[CarlaB]

If you get completely better gluten-free, then I'd assume it's a gluten intolerance or celiac.

I have a gluten intolerance, but it's a symptom of Lyme Disease -- I did not get completely better gluten-free, but I felt somewhat better. I'm not suggesting it's Lyme Disease for you as I don't even know if you have ticks where you are, but just that if you don't get completely better going gluten-free, you might keep looking as your food sensitivities might be due to another problem in addition to gluten intolerance.

[Jestgar]

I have a gluten intolerance, but it's a symptom of Lyme Disease --

How can you tell that it's a symptom of Lyme, and not in addition to Lyme?

[CarlaB]

How can you tell that it's a symptom of Lyme, and not in addition to Lyme?

Well, I guess I don't know for sure. I will only know when I get better from the Lyme. It seems to be the case. I find it suspicious that in the beginning I got glutened frequently and got sick for 8 days each time. I am very careful ... I haven't been glutened since July, and I find that suspicious. Can anyone be that perfect? I know I do not have celiac.

Also, I know that food and chemical sensitivities CAN be a symptom of Lyme. I have had Lyme for over 30 years, so it has basically affected every bodily system of mine, digestion included. Lyme can cause an autoimmune condition in the body. That along with the fact that I tested positive for casein intolerance, went casein free for six months, then added it back to my diet with no reaction whatsoever made me think the gluten intolerance is also probably because of the Lyme.

I will never go back to eating gluten all the time, as it's obviously a weakness in my system and Lyme is opportunistic ... but it would be nice to be able to eat out again without worrying about contamination.

[CarlaB]

Jestgar, I guess I really misstated ... I lost a year of treating my Lyme Disease because all the symptoms matched up with celiac. I got better at first going gluten-free, but the progress quickly stopped and I thought that it just takes time, be patient. Finally, I started looking for something else that may be causing me to be ill. I just wouldn't want someone else to wait that long to start looking for something else ... if they're making progress, yes, keep at it, but if not, then keep looking.

I'm only talking about people diagnosed by dietary response ... obviously if you had a positive biopsy or blood work, it's different. People who "only" have a gluten problem, generally get better gluten-free.

[Jestgar]

I was just curious because I remember that your daughter was also investigating gluten as a possible issue.

I think all these auto-immune responses are just fascinating. It would be interesting to catalog all the different responses that are possible with all the different auto-immune illnesses and see which things are basically common to all of them and which (if any) are specific to each illness. I'll be interested to hear how treating your (and Rachel's) Lyme affects what your body does when you eat gluten. Maybe it really is a symptom....

it would be nice to be able to eat out again without worrying about contamination.

Boy, I here you there!

[jamrock]

Well, I guess I don't know for sure. I will only know when I get better from the Lyme. It seems to be the case. I find it suspicious that in the beginning I got glutened frequently and got sick for 8 days each time. I am very careful ... I haven't been glutened since July, and I find that suspicious. Can anyone be that perfect? I know I do not have celiac.

Also, I know that food and chemical sensitivities CAN be a symptom of Lyme. I have had Lyme for over 30 years, so it has basically affected every bodily system of mine, digestion included. Lyme can cause an autoimmune condition in the body. That along with the fact that I tested positive for casein intolerance, went casein free for six months, then added it back to my diet with no reaction whatsoever made me think the gluten intolerance is also probably because of the Lyme.

I will never go back to eating gluten all the time, as it's obviously a weakness in my system and Lyme is opportunistic ... but it would be nice to be able to eat out again without worrying about contamination.

How does one get tested for Lyme disease? Bloodwork?

[CarlaB]

I was just curious because I remember that your daughter was also investigating gluten as a possible issue.

I think all these auto-immune responses are just fascinating. It would be interesting to catalog all the different responses that are possible with all the different auto-immune illnesses and see which things are basically common to all of them and which (if any) are specific to each illness. I'll be interested to hear how treating your (and Rachel's) Lyme affects what your body does when you eat gluten. Maybe it really is a symptom....

Boy, I here you there!

My daughter who has been gluten-free for over six months is doing a gluten challenge to verify that gluten is a problem for her. We did not see the dietary response we expected from her going gluten-free, and she is not having any reaction at all (so far) to the gluten she's been eating. That is another thing that is making me think it's more of a symptom than anything for me. I KNOW I have reacted to it in the past, and I'm very curious to see how it works out in the future.

[CarlaB]

How does one get tested for Lyme disease? Bloodwork?

Yes, but the bloodwork is notoriously inaccurate ... Open Original Shared Link is the place most Lyme specialists trust. Do you have ticks where you are?