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Self Diagnosis


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#1 mom2easton&eli

 
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Posted 15 April 2009 - 02:56 PM

New here. Actually, I stopped by a few years ago when my son was undergoing the biopsy which came back negative but brought me awareness of Celiac. Now I am back and this time it is for myself. Let me tell you how I got here. Only for the past few weeks have I been getting stomach pains after meals. The pain is a burning sensation from front to back. At the same time, I feel I need to have a bowel movement, but it is difficult. Usually, during the time I am having stomach pains, I do have a bm but my sypmtoms do not go away after the bm. They go away after 2-3 hours. I have no health insurance but did many a google search and chalked it up to gallbladder or ulcer. Then one day I drank a diet Dr. Pepper and ate 2 pieces of bread. The pain was so bad that I dumped out all that was left of my diet dr. pepper stash because I thought it was causing me the pain but the pain after meals did not stop. A few days later, I was so scared to eat but I ate a few bowls of frosted flakes and stated to my husband that strangely, cereal does not make me sick. Later, I made a dessert and ate some of the pudding and cool whip and had no symptoms. A couple of hours later, I could not stand the hunger any more and grabbed what I always grab when I am starving. 2 pieces of bread. I regretted it almost immediately because I was in so much pain after eating the bread. That was Easter Sunday. I reflected on what I had eaten that day and realized that Frosted Flakes are made out of corn which would explain why they don't make me sick and realized that almost for the first time ever, I had not consumed wheat that day until I ate those 2 pieces of bread. Later, for dinner, I ate cheese potatoes and nothing else and for the first time in weeks, I was not sick after a meal. I had not consumed any wheat during that meal. I went gluten free for a few days and my symptoms were very, very mild. Almost not even noticable. I felt so good that I told myself there is nothing wrong with me so today I ate some cake, and left over sphagetti and I paid for that for a couple of hours with stomach pain. So if you are thinking that it sounds obvious that there is a problem here and are wondering why I am here, I do have a question. My question is: Would the pains be so immediate after consuming wheat? From what I have read, it can take days to show symptoms so I am wondering why the stomach aches are immediate. Do you think it is something else like and ulcer or have any of you had immediate symptoms?
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#2 skymgirl

 
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Posted 16 April 2009 - 01:09 PM

Hmmm...the Frosted Flakes are interesting because they're not safe for a Celiac to eat. (I miss them a lot!) They are made with malt flavoring, which needs to be avoided as it contains barley (and therefore gluten). You could be experiencing sensitivity/allergy to wheat rather then Celiac/gluten intolerance.

Obviously, the best thing to do would be do talk to a doctor (GI preferably, but an allergist might help, too) to get checked out while you're consuming gluten so you don't cause any false negatives in testing. (Though testing can be hit or miss, too.) But you could also eliminate your wheat consumption (while still eating gluten) and see if that makes you feel better, or you could go gluten-free and see if that helps, too. You don't need a prescription to be wheat or gluten-free!

I do have a lot of pain and bloating pretty quickly after eating when I eat something I shouldn't, I would say within 20 minutes. My stomach will continue to be rumbly and uncomfortable for a day or so afterward.

Hope that helps a bit, and I hope you're feeling better and have some answers soon!
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Celiac/Crohn's Disease - March 2009

Stop trying to control everything and just let go. -Tyler Durden, Fight Club

#3 GlutenGalAZ

 
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Posted 16 April 2009 - 05:49 PM

Some people react quickley to gluten while others it can take a day or two.

I am self diagnosed. For me growing up I would eat dinner and within 30 or less I would start getting really bad stomach pains. I would feel sick for a couple of hours and have to go to the bathroom a lot during that time. I hated going out to dinner b/c I knew I was going to get sick but didn't know why.
After cutting out gluten I have felt SO much better. It has helped with a lot of things.
Before I knew about gluten... Growing up all of my dr's never knew what the problem was so my medical records have all of their "diagnosis" in them which when looking back majority of them do not apply to me. Its like the dr's just want to say you have something.
I chose not to get an official diagnosis for different reasons one being I don't want it on my medical records. It is hard enough to get approved for health insurance with taking heart medicine for my pulse I didn't want a rider for celiac.

Dr. Pepper I believe is gluten free but my stomach doesn't settle very well with it so I stopped drinking it a long time ago.

Frosted Flakes:
Ingredients
WHOLE GRAIN CORN, SUGAR, RICE, CORN BRAN, WHOLE GRAIN WHEAT, MILLED CORN, HIGH FRUCTOSE CORN SYRUP, HONEY, SALT, MALT FLAVORING, NATURAL FLAVOR, ASCORBIC ACID (VITAMIN C), NIACINAMIDE, REDUCED IRON, PYRIDOXINE HYDROCHLORIDE (VITAMIN B6), RIBOFLAVIN (VITAMIN B2), THIAMIN HYDROCHLORIDE (VITAMIN B1), VITAMIN A PALMITATE, BHT (PRESERVATIVE), FOLIC ACID, VITAMIN D, VITAMIN B12.

Below is from the Kellogg's website:
Question: Do you have any gluten-free products?
Answer:
At this time, we do not offer products suitable for consumers on a gluten-free diet except as follows:
Kellogg's® Eggo™ Syrup, Kellogg's™ Fruit Flavored Snacks and Kellogg's® Yogos are formulated gluten- free and may be acceptable for consumers on restricted diets
Kellogg's® Corn Pops® and Kellogg's® Rice Krispies® might be suitable, depending on gluten sensitivity. Corn Pops have a very small amount of wheat starch added, and Rice Krispies have a small amount of malt flavoring, made from barley. Check with your personal physician to determine if these products are suitable for you.

Hope this helped some...
GOOD LUCK.
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Rebecca

Partial Gluten Free March 2007
Completely Gluten Free February 2008
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Cut out Nitrates//Nitrites January 2009
Problems with Tomatoes and Potatoes -- Cut out Nightshades Aug '09

#4 mom2easton&eli

 
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Posted 21 April 2009 - 08:28 AM

Thanks for your answers. I am in denial so after feeling well I ate take out from my favorite place. It is a chicken salad with a few ingredients that I thought wouldn't contain wheat, but it has a tortilla and I didn't eat the tortilla. Well...I got sicker than a dog! Maybe because the salad had touched the tortilla. I don't know. A few more days gluten free and then feeling so great that I told myself nothing is wrong so I ate pizza. I paid dearly. I realize that some ingredients in Frosted Flakes contain wheat, but I have noticed that the less "pure" the wheat seems to be, the less it bothers me. Wheat bread is an absolute killer. Anyway, I guess I will just stay gluten free since I never get sick while gluten free and because like you, I don't want it on my medical records. I know how it is trying to get insurance. We are self employed and I am scared to have ANYTHING on my records. We are getting insurance soon. But looking back on my family history, my mom has had stomache issues her whole life and has depression, achy joints, etc. She doesn't eat whole wheat/grain anything the way I did so I believe that is why I have been sicker than she gets. My grandmother passed away last May. She had a broken bone in her back and the doc mentioned possible cancer and she basically just decided to check out of this world instead of deal with cancer. I'm not kidding. It was really like that. She died a few days later :( . But, my mom said that she thought for a long time that my grandma probably had stomach cancer because she had hard things in hur tummy and stomach problems. My son has been tested for this. His blood tested slightly positve and his scope was negative. He was only 2 so I always had Celiac in the back of my mind knowing that 2 could be way too young to diagnose. As soon as we get insurance I am getting his blood tested and my other son as well because now I am convinced I come from a family of Celiacs.
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#5 samcarter

 
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Posted 21 April 2009 - 10:52 AM

One of the main reasons I decided to not pursue further testing for celiac was the insurance. We have good insurance now, but you never know, down the road, when you might have to apply for new health insurance. I once got turned down because I was honest about having been diagnosed with depression and an eating disorder. :angry:

If I were you, I would try a strict gluten free diet and see how you feel. That's what I did, when the blood test came back negative. I feel much better. Be advised that as you cut gluten out of your diet, your reactions to smaller amounts of gluten may worsen. I actually prefer this, it lets me know when I have been careless or possibly cross-contaminated my food. And I can work to get better.

As for delayed reactions, my immediate reactions to gluten are neurological: headache, extreme lethargy and sleepiness (same as with dairy). Also hot flashes, which is very weird. Then the next day is when I have bloating and diarrhea. It's very weird. The neurological reactions are the worst; I can't be a good mom when I'm feeling that way!
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Negative EMA test 8/08
Gluten free 8/08
Positive response to dietary change
Dairy free 3/09
Citrus free 5/09
Allergies: bananas, apples, green beans, mold.

#6 prayin4achange

 
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Posted 21 April 2009 - 12:42 PM

If I were you, I would try a strict gluten free diet and see how you feel. That's what I did, when the blood test came back negative. I feel much better. Be advised that as you cut gluten out of your diet, your reactions to smaller amounts of gluten may worsen. I actually prefer this, it lets me know when I have been careless or possibly cross-contaminated my food. And I can work to get better.


Hey there. It's really wonderful that you have a positive change with the gluten-free diet! :) i was wondering what you mean by a strict gluten free diet. I am also trying to figure out if I have gluten problems or something else. I know my problem is dietary, but not completely sure what yet. I know I have a bad reaction to dairy and when I eat too much carbs. So, one step at a time, but I never know what I can eat and for how long i need to eat that way. My husband and I eat at friend's homes from the church and usually I eat before or bring my own food (which always makes our time together better!) but I always feel so bad bc I think I hurt their feelings :( They really try to cook for me, but I just cant eat it. Last time they made some kind of meatloaf I have no idea what was in it and steamed broccoli and barley w/ mushrooms and I got SOOOOOOO sick for like 2 whole days. sometimes it's longer so I was thankful for that. Im really desperate for a change. My life is so messed up I can barely live day by day w/o feeling sick, exhausted, irritable, ect. Maybe I can find help soon :) thank u!

jenn
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#7 mom2easton&eli

 
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Posted 21 April 2009 - 08:27 PM

[quote name='samcarter' date='Apr 21 2009, 11:52 AM' post='527310']
One of the main reasons I decided to not pursue further testing for celiac was the insurance. We have good insurance now, but you never know, down the road, when you might have to apply for new health insurance. I once got turned down because I was honest about having been diagnosed with depression and an eating disorder. :angry:

Yeah I know. Insurance companies are awful. I am relunctant to mess up my boys' medical records, but I also know that nobody would take me seriously unless they have a diagnosis. ie: my inlaws, schools, etc.
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#8 lannex93

 
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Posted 22 April 2009 - 04:05 PM

First of all I want to say that reading what you've all written has been very helpful!

I am also interested in self-diagnosis. I hadn't thought of the insurance issue but it's a good point. My reasons include that the gastroenterologist I've seen is incredibly unhelpful and seemingly uninterested in helping me make any progress. I am afraid he'll just end up suggesting some medication, and whatever is wrong with me I am convinced it can be solved by diet modifications.

Given my symptoms (going on for over 3 months now) I believe I either have gluten sensitivity or intolerance or IBS. After about 2 weeks on an IBS friendly diet I felt no improvement whatsoever, so I've decided to try a gluten-free diet and see how it goes.

My questions are:

How long after starting a gluten-free diet should I expect to notice a difference?

How/when does a gluten sensitivity/intolerance start? (I am 29 and it seems one day I just woke up and had symptoms. They have changed a little but now are mainly bloating, cramps and abdominal pain, and alternating constipation/diarrhea. I'm sure it wasn't quite that sudden, but is this normal for gluten issues?)

And, if I clean my toaster and then devote one half to gluten-free breads and the other to standard breads (it's a 4-slice), is that too close for comfort? How much of an impact does contact with a couple non-gluten-free crumbs have?

Thanks in advance for any advice you can give!
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#9 lannex93

 
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Posted 22 April 2009 - 04:21 PM

One more question!

Do I have to cut out dairy too for the first few weeks or so to let my body heal? And then what's the best way to re-incorporate it without shocking my body?

Or should I just cut gluten for now and see if I get better, then if not, cut the dairy at that point?

(I have tried going dairy-free with no improvements.)

THanks!!!
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#10 mushroom

 
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Posted 22 April 2009 - 05:13 PM

How long after starting a gluten-free diet should I expect to notice a difference?

How/when does a gluten sensitivity/intolerance start? (I am 29 and it seems one day I just woke up and had symptoms. They have changed a little but now are mainly bloating, cramps and abdominal pain, and alternating constipation/diarrhea. I'm sure it wasn't quite that sudden, but is this normal for gluten issues?)

And, if I clean my toaster and then devote one half to gluten-free breads and the other to standard breads (it's a 4-slice), is that too close for comfort? How much of an impact does contact with a couple non-gluten-free crumbs have?

Everyone is different in their response times, both to eating gluten, and to the absence of gluten. Some feel better without gluten right away, for others it takes up to 2-3 weeks for the tummy to settle down and say ahhh! If you don't feel any better after that long there's probably something else going on, either in addition to or as well as. Most celiacs have problems with at least lactose, because the lactase which digests it is manufactured on the tips of the villi in the intestine which are damaged by the gluten. Once those heal most often this intolerance goes away (sometimes not!). Others are intolerant to all dairy. You can try cutting out all dairy and then further down the road re-introducing yogurt and hard cheese, as an elimination test. Or you can just cut out milk, cream, ice cream and see if you still have problems--your choice; the latter is easier but takes longer to be definitive.

There seems to be general agreement that there is a trigger which activates the gluten sensitivity, even though you were born with the gene. Some babies are celiac from birth, some people do not get the trigger even until late in life. It is generally considered to be triggered by stress, illness or trauma of some kind. A lot of women develop it after pregnancy.

As for the toaster issue, the general consensus here is get a new one. I didn't. But recently I had a gluten-eating house guest toast some gluten bread in my toaster, and wham! Now it could have come from the toaster, the spread or the jam, hard to tell. So maybe no gluten even in the vicinity of the toaster. Three days ago I ate an allegedly gluten-free muffin from a herbal center where they also bake with gluten. It was obviously cross-contaminated because two hours later in the supermarket I was running for the loo.l So that's twice in the last ten days that I have been cc'd, but those are the only times in 18 months. It's really a crapshoot.

By the way, most of us here consider IBS to be just a description of symptoms, not a diagnosis. (Gets off soapbox) :)

Hope this was of some help.
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#11 samcarter

 
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Posted 23 April 2009 - 03:47 PM

Hey there. It's really wonderful that you have a positive change with the gluten-free diet! :) i was wondering what you mean by a strict gluten free diet. I am also trying to figure out if I have gluten problems or something else. I know my problem is dietary, but not completely sure what yet. I know I have a bad reaction to dairy and when I eat too much carbs. So, one step at a time, but I never know what I can eat and for how long i need to eat that way. My husband and I eat at friend's homes from the church and usually I eat before or bring my own food (which always makes our time together better!) but I always feel so bad bc I think I hurt their feelings :( They really try to cook for me, but I just cant eat it. Last time they made some kind of meatloaf I have no idea what was in it and steamed broccoli and barley w/ mushrooms and I got SOOOOOOO sick for like 2 whole days. sometimes it's longer so I was thankful for that. Im really desperate for a change. My life is so messed up I can barely live day by day w/o feeling sick, exhausted, irritable, ect. Maybe I can find help soon :) thank u!

jenn


Strict gluten free diet means just that. No gluten in anything. Gluten isn't just in wheat, but wheat is the most obvious source of gluten usually. Gluten is in barley, rye and oats as well as spelt. And because it's in barley, it can hide in seasonings (barley malt) and flavorings.

If you know for sure you have a bad reaction to dairy (and many celiacs also have lactose intolerance, due to the intestintal damage), first cut out dairy. Then see if you improve, and keep a food diary so you can link symptoms to foods you've eaten.
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Negative EMA test 8/08
Gluten free 8/08
Positive response to dietary change
Dairy free 3/09
Citrus free 5/09
Allergies: bananas, apples, green beans, mold.




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