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Who Here Has Not Been Tested?

Linda352

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Linda352 Rookie
Linda352
Posted

I have not been tested for the wheat/gluten factor but am finding on my own that I must have an intolerance to these. I am curious if anyone else on these boards have also just found out through trial and error rather than through testing that they too are sensitive? It seems that a lot of tests come back negative even though many of you are finding that this way of eating is working for you.

Just curious :huh: Thanks!

Linda/NJ

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kabowman Explorer
kabowman
Posted

I have not had any tests - other than an EGD which showed no damage. However, the doc only took three samples so who knows.

Nobody in my family, except for my oldest has been tested and his was negative. My youngest will be tested next month.

My mothers family seems rampant with intolerances, including gluten but nobody really put everything together until I told them that I had all these problems. My sister still will not face facts and had to be told by a holistic doc that she is lactose intolerant. She refuses to listen to my suggestions so now they stay with me. She continues to have horrible problems - same with my mother. My aunt though has given up gluten, without testing, and is much better.

I used an elimination diet over a few months and figured most of my problems out on my own. The docs can't really do that for you and many said that is the best way for intolerances.

Many on this board like the online testing available. I am happy with what my body told me and didn't go that route.

marciab Enthusiast
marciab
Posted

I had an endoscopy and a colonoscopy in 2004, and my GI found plenty, but didn't look for celiac. Just prescribed Nexium, Zelnorm, a diet for this, a diet for that, etc.

So, my GP put me on the elimination diet July 2005 and I put myself on the celiac diet in Sept 2005. My GP diagnosed me as celiac based on diet results in Oct. 2005. She told me that none of the tests for celiac were conclusive at this point and that my reaction to the diet was good enough.

I've used the elimination diet too to figure out my intolerances and it's working well.

This board has helped me get into the habit of looking at all of the ingredients in what I am eating.

Marcia

shellbean Apprentice
shellbean
Posted

I had my gallbladder removed 5 months ago and since I have felt horrible. I have been to the GI doc and my regular doc to see why I have been so sick (severe abdominal pains, excessive painful stomach swelling, digestive problems, constipation, diarreaha, etc). I had a colonoscopy, EGD, CAT scan, Ultrasound, and several blood tests and everything comes back negative. I was told that I definitely had IBS and severe acid reflux but the docs couldn't explain the rest of my symptoms. I've done alot of research on Celiac disease and asked my doc about it. I read celiac can sometimes be triggered by abdominal surgery. They want to do a barium enima and xray on me rather than another blood test. All these tests make me feel worse so I don't really want another major one done. The doc that did the colonoscopy and EGD "forgot" to check for celiac even though I specifically asked him to look. Now they want to do it again. I stressed the blood testing but they keep telling me you can't detect it that way. I feel like they just want my money. Do anyone of you have an opinion on what you would do? Should I get them to do the blood test anyway? I was going to try the gluten free diet to see if that helps to relieve my symptoms. I don't know anything much about family medical history so that doesn't help much. I'm new to all this so any advice on what you have been through would help me make a decision. Best of health to you all!

llmom Newbie
llmom
Posted

My Mom was finally diagnosed with celiac after 2 years and loosing 50 pounds and many docs telling her that she was nuts!!!!!! after she was diagnosed (I am in the medical field myself!) and doing my own research I didn't think much about it - but since I had a baby 8 months ago... the celiac has kicked in with me as well. Pregnancy can cause a flair up. I am diagnosed based on diet, confirmed by my GP. if the diet works and you have a "feeling" that it is celiac then it is!!!! and don't let any doc or anyone else tell you it is not! I am lucky that my doc, OB, and pediatrician all are aware and we are waiting until the little guy is a year to see about him. hang in there

Linda352 Rookie
Linda352
Posted
  • Author
I had my gallbladder removed 5 months ago and since I have felt horrible. I have been to the GI doc and my regular doc to see why I have been so sick (severe abdominal pains, excessive painful stomach swelling, digestive problems, constipation, diarreaha, etc). I had a colonoscopy, EGD, CAT scan, Ultrasound, and several blood tests and everything comes back negative. I was told that I definitely had IBS and severe acid reflux but the docs couldn't explain the rest of my symptoms. I've done alot of research on Celiac disease and asked my doc about it. I read celiac can sometimes be triggered by abdominal surgery. They want to do a barium enima and xray on me rather than another blood test. All these tests make me feel worse so I don't really want another major one done. The doc that did the colonoscopy and EGD "forgot" to check for celiac even though I specifically asked him to look. Now they want to do it again. I stressed the blood testing but they keep telling me you can't detect it that way. I feel like they just want my money. Do anyone of you have an opinion on what you would do? Should I get them to do the blood test anyway? I was going to try the gluten free diet to see if that helps to relieve my symptoms. I don't know anything much about family medical history so that doesn't help much. I'm new to all this so any advice on what you have been through would help me make a decision. Best of health to you all!

Shellbean, thanks for your reply and Welcome to the group. I just joined this amazing site yesterday and can't seem to keep myself away from my computer since discovering this site :lol: Sounds like you have really been through the ringer since your gallbladder problem. I'm sure you must be quite frustrated with all the testing and no real confirmed fines for your symptoms. If I were you I would just go ahead and do the gluten free diet for a couple of weeks and see if you notice any difference. I noticed a big difference within 3 days but have difficulty sticking with it as I'm still learning what foods are gluten-free and which aren't..It's not easy

:unsure: You had mentioned about having a colonopscopy and they forgot to check for Celiac when they did this test. Can they really check for Celiac through a colonopscopy? My gyn. doc has been wanting me to have this done for a few years now and I keep putting it off, I'm such a woos ;) Please let me know if this is true so when I get up the nerve to go through with this I will be sure to have them check for this.

Good luck to you in finding better health and hope the gluten-free way of eating helps you too!

Linda/NJ

ianm Apprentice
ianm
Posted

I figured out what the problem was before I even knew there were any tests for celiac. No way I'll ever get tested. Gluten does not touch my lips for any reason.

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Linda352 Rookie
Linda352
Posted
  • Author
:) Thanks to all of your replies. I feel so much better knowing that I don't have to go through the tests for confirmation. I am interested in learning that a colonopscopy might be able to detect Celiac? :unsure: I am overdue on having this test but when I do get around to it I will ask about this. Good health to all...Linda/NJ
CMCM Rising Star
CMCM
Posted
:) Thanks to all of your replies. I feel so much better knowing that I don't have to go through the tests for confirmation. I am interested in learning that a colonopscopy might be able to detect Celiac? :unsure: I am overdue on having this test but when I do get around to it I will ask about this. Good health to all...Linda/NJ

Linda....at the point where I became suspicious that I might be celiac, I KNEW I would be bypassing doctors. This very site made me aware of other options. Being a person who just "had to know" more definitively, I sprang for the complete Enterolab tests, which for $349 gave me far more information that I ever would have gotten from my local clueless doctor. In this panel of tests, I learned I had the antibodies and autoimmune responses happening, I learned I didn't yet have malabsorption, I learned I was also casein sensitive (no big surprise there!), and I learned I had two genes...one for celiac (from my celiac mom) and a surprising seond gene for gluten sensitivity. This test was easy and worth every penny because now I know what 's going on, plus I was able to bypass expensive doctors and expensive and unnecessary testing, AND....my med insurance company doesn't have to know. Good all around. The end result is the same: I should not eat gluten (or dairy either, in my case).

By the way, the Enterolab tests don't depend on you currently having gluten in your diet as do the blood tests. The Enterolab test is a stool test, and is far more sensitive than blood tests. The gene test is done with a q-tip type swab on the inside of your cheek. They send you the complete kit, you send it back, and then they send you all the results by email. Couldn't be easier...

Linda352 Rookie
Linda352
Posted
  • Author
Linda....at the point where I became suspicious that I might be celiac, I KNEW I would be bypassing doctors. This very site made me aware of other options. Being a person who just "had to know" more definitively, I sprang for the complete Enterolab tests, which for $349 gave me far more information that I ever would have gotten from my local clueless doctor. In this panel of tests, I learned I had the antibodies and autoimmune responses happening, I learned I didn't yet have malabsorption, I learned I was also casein sensitive (no big surprise there!), and I learned I had two genes...one for celiac (from my celiac mom) and a surprising seond gene for gluten sensitivity. This test was easy and worth every penny because now I know what 's going on, plus I was able to bypass expensive doctors and expensive and unnecessary testing, AND....my med insurance company doesn't have to know. Good all around. The end result is the same: I should not eat gluten (or dairy either, in my case).

By the way, the Enterolab tests don't depend on you currently having gluten in your diet as do the blood tests. The Enterolab test is a stool test, and is far more sensitive than blood tests. The gene test is done with a q-tip type swab on the inside of your cheek. They send you the complete kit, you send it back, and then they send you all the results by email. Couldn't be easier...

Carol, Thanks for your reply. I have been interested in this Enterolab test that I've been reading so much about here. Thanks for cluing me in on the price of it. If I get desperate enough I may just spring for it. In the meantime I will just rely on my own diagnosis (much cheaper) and see if eating gluten-free continues to work for me. See you on the boards :) Linda/NJ

shellbean Apprentice
shellbean
Posted

Hi Linda and the others! :) Thanks for the encouragement and advice. It helps me tremendously! From what I know, they can't detect it with a colonoscopy but they had also done and EGD (the one they go down your throat and look at stomach and upper small intestine). That's when he "forgot" to look. He actually "forgot" I had even had my gallbladder removed! And I let HIM go in there??? I won't be going back to him. I am going to try the diet. I'll have to research this site for tips on that. I was actually put to sleep when they did the colonoscopy so I didn't even know they had done anything. My bottom was a little sore but other than that I would have sworn they never went in there. I was more sore from the EGD. But for now I'm done with all the testing. I'll do the diet. Have a great day!!! :D

hungryforlife Apprentice
hungryforlife
Posted

It's just amazing to me everytime I come read here, how little our doctor's really know about Celiacs.

Shellbean, one of the PCP doctors at the practice I go to wanted me to go have my liver and gallbladder ultrasound (ed) ;) but, I wouldn't do it. I went in (again) with nausea and dizziness symptoms. I had told her that I was at my sisters, (we eat love foods there) and that after I had eaten a big cinnamon roll and later the same day, another half (shhh.. they were that good!) that that night I became extremely dizzy and neaseated and needed to throw up. And that usually if I eat sweet breads I get nauseous. Krispy Kreme donuts will do it every time, as will cake with icing. Amazing to me that they would spend that much time on guessing but bock at getting a simple blood test done?

My doctor only did two tests, neither one affective for testing celiac's on their own with out the rest? I gave up my beloved oatmeal and the inability to get up in the morning and the dizzy spells during the day went away immediately. I gave up all gluten for a week and had a very positive response. I went back on gluten after a week in preparation for my DR. appointment with the gastro next week. It's been a week and I wish I hadn't but now that I did, I will continue until after. Either way, after trying for a diagnosis, I plan to go gluten free.

I suspect that my son (4) also has it.

  • 3 years later...
weewee Newbie
weewee
Posted

Hi to everyone in the group. I have been tested for everything but Celiacs so far (not really sure what) but everything seems to come back negative. After a 4 month wait, I finally get to see a specialist in 2 weeks. It is so nice to see that I'm ot the only one that feels alone. I had tried the gluten free diet for 5 days and felt great, but have since strayed due to being laid off and a huge finacial change.

I was just wondering if others are going though things that I am?! Everyday I have back pain, from severe to just noticable. I cannot eat anything dairy without bloating to the point I look pregnant and cramping that most of the time makes me cry myself to sleep. I cannot work out without having muscle spasms where the muscle actually raise from my leg about 2 inches. I gain weight everyday even though I'm eating healthy and living a healthier lifestyle. I have even started eating one meal a day and sadly still gain weight. I have migranes or even just a slight headache pretty much everyday for the last month. My joints hurt everyday (sometimes the tendons near my ankles) and if even a couple hours of work where I'm using my hands, my wrist get to the point of not moving anymore and my fingers swell up like sausages.

:)

amberlynn Contributor
amberlynn
Posted

I have not been tested, but obviously have a gluten problem. All of my issues have essentially ceased. I still have some lingering things, but they've drastically improved.

pewpewlasers Rookie
pewpewlasers
Posted
:) Thanks to all of your replies. I feel so much better knowing that I don't have to go through the tests for confirmation. I am interested in learning that a colonopscopy might be able to detect Celiac? :unsure: I am overdue on having this test but when I do get around to it I will ask about this. Good health to all...Linda/NJ

You'll need an endoscopy and/or blood test to detect celiac. They'll do biopsies and look for damage. Pretty sure they cannot see celiac with a colonoscopy.

briar Newbie
briar
Posted
I have not been tested for the wheat/gluten factor but am finding on my own that I must have an intolerance to these. I am curious if anyone else on these boards have also just found out through trial and error rather than through testing that they too are sensitive? It seems that a lot of tests come back negative even though many of you are finding that this way of eating is working for you.

Just curious :huh: Thanks!

Linda/NJ

i haven't been tested. like you said, trial and error. i definately know somethings up with my tummy but haven't worked up the courage to get a test yet. even if my test came back negative i'd still stay gluten free! i feel a million times better since i've been gluten free!!! stick with it if it's working for you!!!

haleym Contributor
haleym
Posted
I have not been tested for the wheat/gluten factor but am finding on my own that I must have an intolerance to these. I am curious if anyone else on these boards have also just found out through trial and error rather than through testing that they too are sensitive? It seems that a lot of tests come back negative even though many of you are finding that this way of eating is working for you.

Just curious :huh: Thanks!

Linda/NJ

My blood test was negative for celiac, but my ARNP said that false negatives are definitely not unheard of. I figured it out myself after doing an elimination diet- I was going to go back in to get an endoscopy but then my Mom convinced me that my own experience is diagnosis enough.

sixtytwo Apprentice
sixtytwo
Posted

To Hungryforlife, I get those same symptoms, I call them neurological as it is like I am in a stupor and I just have to go to bed and sleep it off. Happened just recently when I ate some regular pumpkin bread (what was I thinking), won't do that again. I am fine if I just eat gluten-free. I did do the Enterolab full deal and I have the gene, a sensitivity to gluten and at the lactose, but that has passed. Although not many people have responded, this thread has had a lot of lookers, so it may be important to many.

Barbara

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