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Frustrated!

bazil323

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bazil323 Newbie
bazil323
Posted

Okay, I've been having trouble with health, well, all my life I guess. I have had a diagnosis of asthma since I was a baby. Not surprising since my dad, brothers, and many, many other relatives also have this. I also have ichthyosis (aka fish skin syndrome--how special), which is a skin condition where my skin looks dry and flaky all the time. I have multiple environmental allergies to things like molds, pollens, cat dander, etc. Thankfully, I have no drug or food allergies that I am aware of.

Anyway, I have always known that my grandma has celiac disease, but I never really looked into what it was. I didn't really think about it being genetic or anything. It was just "grandma can't have gluten." Now that I've gotten older, I realize that it may run in my family. My aunt and her daughter have it, and my mom suspects that she and my sister have it. Btw, all these relative are on the same side of the family. With this history and some convincing from my mom, I decided to consider whether or not I may have celiac disease too.

My symptoms were mainly that I have frequent diarrhea. Occasionally, I will get somewhat constipated, but that is fairly infrequent. This diarrhea is characterized by having a sudden urge to go followed by 1 or 2 liquid or soft stools. Then I'm fine. Sometimes I will have a "burbley" belly beforehand as well.

After looking into the symptoms of celiac disease, I think that some other things I thought were unrelated may also be symptoms of celiac. Such as my frequent, okay daily, headaches. Now that I have confirmed that I do not, indeed, have chronic sinusitis (went to a specialist and had 2 CTs in 2 months as well as over a month of antibiotics), I'm looking at other possibilities.

Given the varied nature of celiac disease, I can't help but think that so many of my digestive problems and perhaps the severity of my environmental allergies and asthma may be linked. Now that I realize that I have several family members with celiac disease, I think that I really should get checked out. I know that I should, but I just hesitate to bring this up out of the blue to my doc. He's been great, but I've only been going to him for about 2 years. I just want to be as prepared as I can be.

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mushroom Proficient
mushroom
Posted
Okay, I've been having trouble with health, well, all my life I guess. I have had a diagnosis of asthma since I was a baby. Not surprising since my dad, brothers, and many, many other relatives also have this. I also have ichthyosis (aka fish skin syndrome--how special), which is a skin condition where my skin looks dry and flaky all the time. I have multiple environmental allergies to things like molds, pollens, cat dander, etc. Thankfully, I have no drug or food allergies that I am aware of.

Anyway, I have always known that my grandma has celiac disease, but I never really looked into what it was. I didn't really think about it being genetic or anything. It was just "grandma can't have gluten." Now that I've gotten older, I realize that it may run in my family. My aunt and her daughter have it, and my mom suspects that she and my sister have it. Btw, all these relative are on the same side of the family. With this history and some convincing from my mom, I decided to consider whether or not I may have celiac disease too.

My symptoms were mainly that I have frequent diarrhea. Occasionally, I will get somewhat constipated, but that is fairly infrequent. This diarrhea is characterized by having a sudden urge to go followed by 1 or 2 liquid or soft stools. Then I'm fine. Sometimes I will have a "burbley" belly beforehand as well.

After looking into the symptoms of celiac disease, I think that some other things I thought were unrelated may also be symptoms of celiac. Such as my frequent, okay daily, headaches. Now that I have confirmed that I do not, indeed, have chronic sinusitis (went to a specialist and had 2 CTs in 2 months as well as over a month of antibiotics), I'm looking at other possibilities.

Given the varied nature of celiac disease, I can't help but think that so many of my digestive problems and perhaps the severity of my environmental allergies and asthma may be linked. Now that I realize that I have several family members with celiac disease, I think that I really should get checked out. I know that I should, but I just hesitate to bring this up out of the blue to my doc. He's been great, but I've only been going to him for about 2 years. I just want to be as prepared as I can be.

Hi, and welcome to the forum.

I think it is a good idea that you should be checked for celiac. In order to overcome possible doctor resistance, I would make out a list/family tree of all the members of your family who have celiac. Then make out a list in bullet form of all and any symptoms you have that are consistent with celiac disease and the the other possible diagnoses that have been ruled out by testing and then simply request him straight up to run the celiac panel on you (all five tests). If he thinks your symptom are not "bad enough" tell him you do not wish to wait until you develop serious problems before finding out they could have been prevented. And I am sure you have read up on what they are--anything from diabetes to hypothyroidism to bowel cancer to rheumatoid arthritis to mulltiple sclerosis. You would not want any of these. Depending on his familiarity with celiac disease you may or not meet with any resistance.

Good luck. and let us know how it goes.

bazil323 Newbie
bazil323
Posted
  • Author

Thanks! Any good websites with a comprehensive list of symptoms that you know of? I've done a lot of reading on it, and at one time, I did actually write out what I had for symptoms and who was in my family with it but lost it. I'd like to reread some of this stuff so I can be better prepared. The visit with the specialist about my possible sinusitis was so nervewracking because he took it in a different direction (everyone thought I had chronic sinusis, but the specialist actually read the CT and said no. Very nice, but surprised me). I want to have all my bases covered to prevent any hysterics on my part, lol. I tend to get really nervous and tearful when I have to bring up something that I have no idea what I'm going to have to do to fix.

LDJofDenver Apprentice
LDJofDenver
Posted
Thanks! Any good websites with a comprehensive list of symptoms that you know of? I've done a lot of reading on it, and at one time, I did actually write out what I had for symptoms and who was in my family with it but lost it. I'd like to reread some of this stuff so I can be better prepared. The visit with the specialist about my possible sinusitis was so nervewracking because he took it in a different direction (everyone thought I had chronic sinusis, but the specialist actually read the CT and said no. Very nice, but surprised me). I want to have all my bases covered to prevent any hysterics on my part, lol. I tend to get really nervous and tearful when I have to bring up something that I have no idea what I'm going to have to do to fix.

Here are a couple of links to sites listing "usual" symptoms:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

It's too bad we have present a case and prove to our doctor that it would be smart to test us for something, isn't it? I had the same experience, even though my adult son had been diagnosed with it about 11 yrs ago! Once I got to the G.I. doc it was a whole different level of knowledge (within my medical system), but getting through that first line (with my primary care doc) was ridiculous. I actually had to change doctors to finally get one to listen and do the test. And good thing I did because my blood work was positive for it, and it was further confirmed by endoscopy (small bowel biopsy).

Be persistent. It's your health.

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