Yet Another Newly Diagnosed Celiac

[KaitiUSA]

Well do know which tests that you had done? Some are specific for celiac and have a low false rate. Do you know how high they were? If they were elevated the chances are that you do have it. Some doctors use an endoscopy to officially diagnose it after the blood results and others just use blood tests.

[scoutfinch]

Hi Wandering Hermit:

I'm also relatively new to the gluten-free diet. At first, I had no idea what to eat. Then I figured out a few things that I could have (like white corn tortilla chips and cheese), and then went overboard on them. I think it takes a while to get more comfortable with food, but you'll soon develop a core group of staples. I guess that my initial advice is to avoid overdoing it with the "comfort" foods that you can have (like me and my nachos) in an effort to compensate for the satisfying foods you miss.

I've stopped really trying to find gluten-free substitutes for baked goods. They're more of a disappointment than a help when you're just starting on the gluten-free diet - it just made the feeling of loss even worse for me. On the other hand, I did discover some gluten-free corn and sesame thins (kinda like a rice cake) that make pretty tasty PB&J sandwiches.

[gabrielle]

Hi Wandering Hermit,

Welcome to the board!!! I am also realtively new to the gluten-free lifestyle an still learning things everyday. I didn't read everyone's post so far, but it is not just your foods and utensils you want to make sure are gluten-free, but your shampoos and lotions as well... ( I didn't know that until I started posting here There are some very smart people on this board and everyone is very helpful!).

What really helped me was getting gluten-free cookbooks (I loved to cook and I baked all the time so this was really hard for me to deal with) I recommend Bette Hagman's cookbooks. They are easy and versatile.

I really hope that you can feel healthy again and remember to take every day at a time!!

Good Luck!!!

[ianm]

I went to so many doctors and not one of them ever suggested a food allergy. There are very few doctors out there that will be of any help. Basically we're on our own with this. Getting nailed with gluten from time to time is inevitable. I've found that by keeping myself as healthy as possible I can recover in a day or two depending upon much I ingested. Very small amounts don't seem to do too much damage or slow me down much. I've never bothered to get a formal diagnosis because I am not willing to ingest gluten. I can't afford to be out of action and it's just not worth it to confirm what is already obvious.

[FaithInScienceToo]

Hi, there WH,

I have enjoyed reading your posts and the replies.

Welcome aboard...

You have found a terrific group of people...I have learned SO much here, and wish I could add to all the info in your replies...

All I know to add right now is:

I'm glad for you that you learned of your illness rather quickly...i went through 20 years of mis-diagnoses/treatments...including a barium enema, 2 anal surgeries, etc...

Now, all I have to deal with is the social hassles of being gluten-free...

But, as you have noted, being gluten-free makes one eat a MUCh healthier diet than the typical JUNKY American diet...gotta be grateful for that.

:-)

Best wishes, Gina, who is fast becoming a good cook!

[Wandering Hermit]

Thanks everyone for the great posts!

I'm defintely trying to see the bright side of this - the healthy diet. You know, the idea of giving up certain foods does not bother me so much. Even the ones I really like. The thing that is getting to me is all the little nit-picking and worry about getting contaiminated by trace amounts - to do all this work and sacrifice and then get blasted anyway by some inadvertant mistake. And my growing paranoia about every kitchen utensil.

Otherwise, bring it on.

More on my doctor - he gave me this list of acceptable and unacceptable foods. It's photocopied from a book. You know what it says is safe? Genral Mills Cocoa Puffs! (?) Is this really true? I have a hard time believing that.

If it wasn't for the fact that I am curious and I am poking around on the web about this, I'd be screwed. I'd hardly be worried about bread crumbs of wooden ladles.

[celiac3270]

Yes--you have a great attitude. I felt the same way when I was diagnosed--knowledge is power....you seem to be right on track

The General Mills company will clearly list gluten. That is to say, if gluten is hidden in....flavorings or modified food starch, they promise to put parentheses after it that say "wheat" or "rye" or "barley" if one of those ingredients are contained in it. So just read the label and you can find out if it contains gluten w/o even calling the company.

[KaitiUSA]

Wandering Hermit-There are 2 cereals that are gluten free and they are cocoa and fruity pebbles by Post. Post won't hide anything either.

[Rikki Tikki]

Hi wandering hermit:

Welcome aboard. It's always great to have someone new. I can tell you from my experience that before I knew about the celiac I was sick all of the time. Now, if I even get a little bit in my I get very ill. I think our bodies attack any type of gluten when it get's in.

I agree with Kaiti, the car crash makes sense.

[Wandering Hermit]

Well do know which tests that you had done? Some are specific for celiac and have a low false rate. Do you know how high they were? If they were elevated the chances are that you do have it. Some doctors use an endoscopy to officially diagnose it after the blood results and others just use blood tests.

No, I don't know the details, my doctor didn't give me much info - obvioulsly he doesn't know much about it to begin with. I'll be asking for more info on the next visit.

Here's a question - for the blood test to be accurate, do you currently have to have gluten in your body? If you have been gluten-free for a year, will the blood test still indicate you are a celiac?

I'm not real crazy about the idea of the endoscopy. I had one done about 5 years ago for something else, and it was the worst medical experience I ever had. I hope not all GI doctors are like that one. They barely drugged me up and I was very conscious of what was going on and basically gagged and choked and squirmed the whole time.

[aljf]

Open Original Shared Link

this is the university of maryland's website. they are the leader in research. this page has their advice re: diagnosis.

[Rikki Tikki]

Hi Hermit:

I believe they have the positive blood results and then confirm it with the biopsy. But I believe that if a person has a + for the blood they shouldn't have to do the biopsy. In my case the doctor didn't tell me about the + blood test until he had scheduled the biopsy.

[celiac3270]

Yes--you have to be on gluten for at least about three months before the blood test to get an accurate diagnosis (but if you were gluten-free for a week before the test or something, it won't affect it). If you were gluten-free for a year, though, your results would likely come back negative for celiac disease regardless of whether you actually have it. Simply, blood tests are only accurate if you're on gluten. Otherwise the antibodies will go down leading to a negative diagnosis.

You don't need an endoscopy if you get positive bloodwork. Blood is enough to diagnose--the reason for the endo. is just to make sure, since many wouldn't want to make such a drastic lifestyle change if it wasn't necessary. I had the endoscopy done...twice, actually, February 2004 and around October 2004. Both experiences were good...well, for having a test done, anyway. They put me to sleep completely, since I'm a kid. Perhaps your doctor wasn't very good so it was a bad experience; both of mine did an excellent job....You don't need the endo.--it's basically if you want further proof. Though some docs want you to have one if your bloodwork is slightly questionable.

[junevarn]

HI all,

I am new to this board. I actually diagnosed myself. I get attacks of diarrhea, nausea, vomiting, shaking, extreme anxiety and palpitations that last six hours. This happens once a month. I have had it for ten years. Since the last MD I went to advised that I see a psychiatrist I decided to do some research. This led me to Enterolab. I have antibodies to gluten and casein and antitissue transglutaminase. I also have one of the main genes for Celiac Disease, HLA-DQ8. I have been gluten and dairy free since October.

That was enough proof for me. I don't want to go through a biopsy. My Mom has had pancreatitis, a bowel abscess that needed surgery and breast cancer. She also has osteoporosis. She has had these same attacks since she was 20 and she is now 80! When she asks her MD about the attacks he pretty much says he doesn't know what causes it!

I started going to a nutritionist today who is very knowledgeable about Celiac. Its going to cost a lot out of pocket but I don't want to suffer any longer. He said that I could have other problems like bacteria and parasites due to the damage to the villi. He also said that I probably have other food allergies due to Leaky gut. I started a partial elimination diet after I saw him today. I am also going to have a bunch of lab tests to test for deficiencies etc.

I guess that I'm just asking for support. I feel quite alone in this. It has limited my life since I have become afraid of going too far from home. I went on a cruise to Alaska last August with my husband before I knew and was extremely sick three times in one week. I lost six pounds in one week!

Well, thanks for listening. I appreciate it. I know what I have to do, I have been quite motivated to avoid these symptoms. I just want to be in contact with others who have gone through the same thing. I just hope that I don't have permanant damage from gluten at this point.

Thanks again,

June

[Rikki Tikki]

Welcome to the boards June. You will find a lot of people that feel just like you and that have been through the same symptoms and feelings.

[celiac3270]

You've come to the right place .

A few of your mom's symptoms sound like classic untreated celiac. Osteoporosis is very likely if celiac is left untreated (due to malnutrition), other problems with the digestive organs or system are nearly imminent....cancer is more likely, but I think that's limited to intestinal cancers...

Not that you need any reassurance, but you definitely seem celiac. Symptoms match up (though there is no set of "normal" symptoms) and the two genes that you look for, I think, are the HLA-DQ2 and the HLA-DQ8. I haven't done much research on this, but you have the DQ8, so that makes you an even more likely celiac.

You won't have permanent damage from gluten. Some people here have had symptoms since childhood and are now in their 30s, 40s, or 50s.

Good luck and you're not alone! Post any questions you have

-celiac3270

[ianm]

Welcome June. Doctors were of absolutely no help to me. I have learned more form this website than any other source. I am self diagnosed also and I don't need a formal diagnosis either. My life is so drastically different and better since I stopped eating gluten. It's never too late to go gluten free and you're not alone here. Lots of very informed people here and new ones joining everyday.

[FaithInScienceToo]

Hi, June!

Just wanted to add my welcome here, too...

I also self-diagnosed... at the beginning of this year. I went gluten-free on my own, then ended up at a GI's office after referral from a nurse practitioner for what turned out to be an internal hemorrhoid...I told him I had heard that it was too late for him to diagnose me 'celiac' since I had already gone gluten-free, but he decided to do blood tests on me anyway, even after my being gluten-free for 6 weeks...then he did an endoscopy at 2 months gluten-free....

He diagnosed me "Probable Celiac Sprue" this past week, since a blood test result (IgA) was so close to what would have been positive if I'd been consuming gluten (I had an IgA of 29, at 6 weeks gluten-free, and an IgG of 6.8), and also because of my positive dietary response, and because of my Enterolab tests results (which he took seriously, it seemed).

I also learned from Enterolab that I have the same gene as you - the #8 one...which is found only in 5% of Celiacs, and that I am also casein sensitive, but I have yet to let go of dairy entirely...In fact, I just guiltily ate some aged sharp cheddar, and will probably regret it soon...

I applaud you for going both gluten and casein free simultaneously! That's terrific!

I really need to let go of all dairy...I only 'depend on' cheese now and then, especially parmesan for seasoning and sharp cheddar for a 'treat'...the cheddar I can let go of more easily than the parm...

but, I also eat some Trader Joe's dark chocolate, with almonds in it, every night...I will need to find a dairy-free version that I like...

Do you know off any?

Best wishes, Gina

[mom]

just wanted to let you know that my celiac disease was triggered in much the same way. I was traveling on my job about every 10 days and then, I also contracted a bug and at the same time my Dad was dying. So , I can identify with you. I am also glad that I found out that I was celiac disease so that I no longer eat gluten. I have been eating gluten-free for 6 months and can really tell the difference, even though I am still very anemic. Again, welcome!

Mom

[junevarn]

Thank you everyone for your replies. It is very comforting to know that I am not alone. I have been vacillating between depression and relief to know what has been wrong with me. I am 48 years old and have had symptoms as long as I can remember, especially anxiety.

I do need to get a separate toaster. I was also wondering about teabags. Can anyone answer that?

Gina, I make coconut cocoa cups. You take three tablespoons of extra virgin coconut oil and melt it, then add in 2-3 tbs of unsweetened cocoa(dairy free). Pour into paper muffin cups. I like to add almonds and shredded coconut. Put on a cookie sheet and put into the freezer. I have sugar issues so I use unsweetened cocoa and coconut. Thats how I have been getting my chocolate fix! There are chocolates made with cocoa liquor instead of milk. I have seen them on some gluten free websites. Unfortunately I can't have chocolate on this elimination diet. Thank goodness its only for a week or two.

Thank you all again for the comforting words.

Sincerely,

June

[Guest gillian502]

When I first began researching celiac disease after my diagnosis, I remeber seeing that there were really 2 kinds of celiac disease--one is the type we all have, but there's a less common variety that is caused by traveling outside the US, it is primarily bacterial, and requires antibiotics. This type also may not require a life long commitment to the diet, although I do not remember that detail for sure. If you first got sick while out of the country, please look into this further; you may have the less common type of celiac disease that requires meds and therefore are not being fully treated by your uninformed doc. Also, has he tested you for various bugs and stuff like H-pylori? Picking up an illness like this in another country is different than simply feeling sick for years and then being diagnosed. It could have many causes and require more than just this diet.

Gillian

[FaithInScienceToo]

Hi June, and WH! - You two newbies are now mixed in the same 'thread' ;- )

Thanks for the recipe, June!

I LOVE coconut, so I will probbly love those cocoa cups!

Feel free to e-mail me via this site, June,

if you ever feel the need to talk privately

with another female celiac/casein sensitive member.

We certainly have some common 'stuff' to deal with.

Have a great week ahead, everyone!

Gina

[Guest nini]

For all the newbies, especially if you are planning to travel a lot, there is a great book "Against the Grain" by Jax Peters-Lowell that not only gives basics on the gluten-free diet, but has great tips for traveling and eating out safely and gluten-free. She even has restaurant cards in several different languages that you can copy and carry with you when you travel.

Open Original Shared Link

[junevarn]

Hi Gillian,

One of the tests I am going to have is for H. pylori. I am having a bunch of fasting blood tests on Wednesday. I did go to India in 1992 and I'm wondering if I picked something up there.

Thanks everyone for your support. Today was agood day, I went biking with my husband, it was a gorgeous day! Afterward we took out food from Pollo Loco. I had chicken, pinto beans and veggies. We went to a nice park and ate there. I feel much better since being gluten-free.

Gina,I hope you like the coconut-cocoa cups. I use a bit of stevia to sweeten them.

Sincerely,

June

[Wandering Hermit]

Well do know which tests that you had done? Some are specific for celiac and have a low false rate. Do you know how high they were? If they were elevated the chances are that you do have it. Some doctors use an endoscopy to officially diagnose it after the blood results and others just use blood tests.

Well I got my numbers:

gliadin IgA = 21 (0-19 normal) - this was called a 'weak positive'

gliadin IgG = 82 (0-19 normal) - moderate/high

transglutamase = 4 (0-19)- normal

I'm still trying to interpret tham all and get some idea of the probability that I was correctly diagnosed. A co-wroker's wife is a doctor and her 'opinion' is that it is 'trendy' today to daignose celiac disease. What crap. I don't need statements like that to wreck my nerves even more.