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Just Diagnosed With Celiac Today

AmyinTX

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AmyinTX Newbie
AmyinTX
Posted

Hi, I'm Amy and was diagnosed today with Celiac. I have been told for over a year that my rashes all over were Psoriosis. After feeling horrible for a very long time, I went on a cleanse/fast for 5 days. I felt amazing and my rashes were gone! The day I started eating again I felt horrwible! I called my Dr and told her and she had an "A Ha!" moment. FINALLY a diagnoses. I finally got my test results back today and my IGA is 573 normal range is 80-400. There is some other test I don't understand. Anyway, my next adventure is an colonoscopy and endoscopy to check for damage. I have not eaten anything with Gluten in a few days since my Dr. asked me not to and I am feeling better already. I am really craving a PB and J sandwich though! This is going to be a huge change for me since I am addicted to tortillas..LOL

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love2travel Mentor
love2travel
Posted

Hi! You will undoubtedly go through a host of emotions coming to terms with this and just know that is completely normal. It must be reassuring for you to experience success eating gluten free for a few days and feeling better already! That is awesome and shows you are on the right track. You will eventually find a new normal. I was diagnosed with celiac disease six months ago and whilst I was shocked at first (did not see it coming at all) after nearly two months I was really into it. It sure helps if you love to cook and bake as you will be doing more of that. :)

There are many tortillas you CAN have as many are made with corn. Or, if you feel a bit ambitious, you can make your own. No worries on cooking/baking - go on over to the food and recipes board for lots of yummy ideas.

Were you told you must be eating the equivalent of 3-4 pieces of bread a day for 3 months prior to having biopsies done? You could have false negatives if you are OFF gluten prior to the biopsies. Also know that only 40% of biopsies done in Canada and the US are done correctly so demand that you have at least 8-11 biopsies taken - many do only 3-5. The more you have the better the chances of accuracy. However, there are STILL chances of false negatives if the biopsies are not taken in the right spots. Many people find that eating gluten free and feeling so much better is all the diagnosis they need. In fact, they get so sick from digesting gluten they do not have the biopsies done. As I did not get sick from eating gluten, I went ahead with the challenge because I was in denial. I was so misinformed that I did not realize you could have celiac disease and be astymptomatic OR have no GI symptoms. I have come a long way, thanks to this board. Sounds trite but it is true.

Anyway, this board is an excellent source of information. I learned about 94% of all I know about celiac right here. Many health care professionals unfortunately are very unaware so we must educate ourselves. :(

pricklypear1971 Community Regular
pricklypear1971
Posted

Move your addiction to corn tortillas!

Congrats on the diagnosis. Peruse Tge boards and ask lots of questions. You can still have pbj, just on different bread.

melanie-c Newbie
melanie-c
Posted

Food for Life also makes a really good brown rice tortilla that I believe is Gluten free (new here and to Celiac so not 100% sure).

AmyinTX Newbie
AmyinTX
Posted
  • Author

I have to schedule my colonoscopy and endoscopy tomorrow. I am FREAKING OUT about it! some people say you are out out for it, and that is what I am most fearful of. Ever since I was little, I have had this fear of being put to sleep and never waking up. <sigh>

sa1937 Community Regular
sa1937
Posted

I have to schedule my colonoscopy and endoscopy tomorrow. I am FREAKING OUT about it! some people say you are out out for it, and that is what I am most fearful of. Ever since I was little, I have had this fear of being put to sleep and never waking up. <sigh>

Welcome, Amy! I hear ya! I was quite nervous about both procedures but have to say that my greatest fear was fear itself. I'm sure you'll do fine and it's such a huge relief when it's over.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I've had colonoscopies and the endoscope. They don't "put you out" for those tests. They give you a sedative to make you relax..and it kind of makes you forget about the procedure.

Good luck to you!

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Food for Life also makes a really good brown rice tortilla that I believe is Gluten free (new here and to Celiac so not 100% sure).

They do label them gluten-free but just to warn you some people have had trouble with that brand. The company had a recall of their tortillas in Canada last year due to undisclosed wheat. If they don't make you sick then enjoy but if you find you are mysteriously being gltuened you might want to suspect those tortillas. They made me very sick and I won't buy anythign from that company.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi, I'm Amy and was diagnosed today with Celiac. I have been told for over a year that my rashes all over were Psoriosis. After feeling horrible for a very long time, I went on a cleanse/fast for 5 days. I felt amazing and my rashes were gone! The day I started eating again I felt horrwible! I called my Dr and told her and she had an "A Ha!" moment. FINALLY a diagnoses. I finally got my test results back today and my IGA is 573 normal range is 80-400. There is some other test I don't understand. Anyway, my next adventure is an colonoscopy and endoscopy to check for damage. I have not eaten anything with Gluten in a few days since my Dr. asked me not to and I am feeling better already. I am really craving a PB and J sandwich though! This is going to be a huge change for me since I am addicted to tortillas..LOL

Welcome AmyinTX! With that high of numbers you are positive for sure. Do be aware that going gluten-free before the biopsy could mean that you biospies won't find any damage. Another common problem with the biopsies are that they don't take enough samples. Ask the dr how many samples they are taking and ask that they take 8-11 if they don't tell you that number already. they can't see the damage while doing the endoscopy so they are just guessing about where to biopsy. You'll be fine!

For PB&J look for either Rudi's or Udi's gluten-free breads. You can also make it on rice cakes if you can't find the good gluten-free breads. Mission corn tortillas are gluten-free and you can also make your own corn tortillas with MaSeCa Masa Harina.

JoshB Apprentice
JoshB
Posted

The "IGA" you're referring to is simply an indicator that your "A" type antibodies are in working order -- the other tests can report false negatives if you're low here. It has no bearing on whether you are celiac positive. It's the other numbers on your test that actually count.

If you have positive blood work, you almost certainly have celiac disease. In fact, the certainty is much greater than with the endoscopy. The endoscopy at this point may give you some indication of how bad off you are, but even a negative endoscopy should be taken to mean that they either missed your damage or that you caught things early. Studies show that a follow up endoscopy after a negative scope and positive blood work will find damage on the scope 95% of the time one year later if the patient continues on a normal diet.

With that in mind, I would not keep eating gluten just to emphasize damage on the scope. Every day you are losing irreplaceable bone mass, and may be doing some of the other associated sorts of damage. Unless your scope is months away, it's very unlikely that any diet change you make now will visibly effect your results. As an adult with celiac disease, if you've progressed to level III villi changes, you have more than a year of healing ahead of you.

AVR1962 Collaborator
AVR1962
Posted
This is going to be a huge change for me since I am addicted to tortillas..LOL

Funny you say this! My breakfast normally used to be a tortilla scrambler. Good news, you can make your own gluten free tortillas yourself. Congrast on your diagnosis. I was was diagnosed today.....benn gluten-free since April.

lovegrov Collaborator
lovegrov
Posted

I'm pretty certain that they don't really knock you out for tests, but they do give you a sedative that is an amnesiac. I don't remember my colonoscopy or either of my endoscopies. Now it's time for another colonoscopy 10 years later.

richard

JoshB Apprentice
JoshB
Posted

I'm pretty certain that they don't really knock you out for tests, but they do give you a sedative that is an amnesiac. I don't remember my colonoscopy or either of my endoscopies. Now it's time for another colonoscopy 10 years later.

richard

It depends on your doc and possibly what you ask for. My GI has finally talked me into one, as some issues aren't resolving. I'm supposed to go in a few days here, and he says I've got my choice between full sedation, a little something for the pain, or nothing at all.

AmyinTX Newbie
AmyinTX
Posted
  • Author

Thank you for all the great feedback! I was not told to eat gluten for the Colonoscopy, it was actually the opposite. I was told " Gluten is your enemy" do not eat it! LOL She just wants me to have one to see how bad my damage is, and to make sure there isn't anything else going on. Ya, I hope I am just sedated and put out totally.

It's going to be next week sometime. Looking forward to having more energy..I'm always so tired all the time.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Thank you for all the great feedback! I was not told to eat gluten for the Colonoscopy, it was actually the opposite. I was told " Gluten is your enemy" do not eat it! LOL She just wants me to have one to see how bad my damage is, and to make sure there isn't anything else going on. Ya, I hope I am just sedated and put out totally.

It's going to be next week sometime. Looking forward to having more energy..I'm always so tired all the time.

Are you havign a colonscopy or are you having an endoscopy? Colonoscopy looks at the wrong end if they are looking for celiac-related damage.

AmyinTX Newbie
AmyinTX
Posted
  • Author

Are you havign a colonscopy or are you having an endoscopy? Colonoscopy looks at the wrong end if they are looking for celiac-related damage.

I am having both.

Reba32 Rookie
Reba32
Posted

not sure what they'll be looking for on the colonoscopy, but in order for the results of biopsy from the endoscopy you MUST be eating gluten to get correct results.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

One of the reasons they like to do the colonoscopy is to see if there is some Crohn's damage. It some of the same symptoms as Celiac.

There is also a staining test of biopsies that can be done to check for Mast cells. They can help a Dr. DX problems too, but most don't do that one since it's a fairly new idea.

AmyinTX Newbie
AmyinTX
Posted
  • Author

One of the reasons they like to do the colonoscopy is to see if there is some Crohn's damage. It some of the same symptoms as Celiac.

There is also a staining test of biopsies that can be done to check for Mast cells. They can help a Dr. DX problems too, but most don't do that one since it's a fairly new idea.

Yeah, I think that is why they want to do it. It's not scheduled yet, I am scheduled to see another specialist. They did several blood tests specific to Celiac and they were positive. I'm not going to eat Gluten anymore. After less than a week I feel a million times better and my rash is almost totally gone! My dad had crohn's disease, and cancer after that. He had a section of his intestine removed due to that and eventually died of prostate cancer, so they want to check everything with me. Cancer runs in my like crazy.

I will keep you updated:)

Twinklestars Contributor
Twinklestars
Posted

Your GI sounds great :) I'm glad they've diagnosed you based on your blood test results, it means you can now be gluten free and stay that way.

You'll be fine at your endoscopy and colonoscopy xxx

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