Newly Diagnosed

[nvsmom]

Bummer.

I went for my lab results appointment today and I was half expecting the doctor to say I was fine and then I'd have to decide to go gluten-free on my own... but with the back-up plan that I could probably abandon it some day as long as celiac didn't develop like it did in my cousin... Nope.

I definitely, without a doubt, have celiac.

The Biocard home test I did, with not quite enough blood, gave me a very faint positive after I increased my gluten for about 2 weeks. I wasn't sure I had it but it really looked like I did, but kept askingmyself, what if I did it wrong? I doubted...

I had blood work done another 2 weeks later (June 19)after more than normal "glutening". This is what I was tested for along with the results:

Urea Breath Test = Negative - absence of Helicobacter pylori (yeah!)

Endomysial Antibody = Positive abnormal

Endomysial Antibody Titre = 1:40 abnormal

Endomysial Antibody Comment = The celiac screens on your patient are positive. These screens have >90% positive predictive value. Guidelines advise that your patient be referred for an intestinal biopsy. Treatment without biopsy is not recommended. The diet for celiac disease is complicated, expensive and must be followed for life. Referral should be made prior to initiating a gluten-free diet.

Immunoglobulin A 2.07g/L with reference range of 0.60-4.20

Tissue Transglutaminase IgA

>200 H

kU/L with reference range of 0.0-20.0 (their bold)

Sooo, tTg IgA and EMA are both positive... That's it then. I'm having my last pizza, cinnamon bun, and beer tonight.

And I'm skipping the biopsy. I believe my diagnosis so of what benefit could it be to me? If there is a benefit, someone please let me know... I'm new at this.

I know I'm not going to be fully gluten-free until at least the weekend. I have a busy few days coming up and I won't get groceries until the weekend. I will cut as far back on gluten as I can... Tomorrow, when I'm done my pity party... And after I figure out where to start!

I thought I was okay with this but now that I know for certain that have it I'm struggling a bit with some pity and anger. I'll get on with it, that's my way, but for now I'm bummed.

...And my kids... I hope they are in perfect health and will continue to be. I will arrange tests for them next month, although it scares me to do so.

I guess it's time to stop lurking, eh?

Nicole

[beachbirdie]

Well, I don't really know what to say, I never know whether to say "congratulations...now you know and can go on to be very healthy" or whether to say "aww, I feel awful for you, this is such terrible news".

It is perfectly normal to have emotions all over the place when you get information like this. It's okay to whine some, cry some, be a little scared of the unknown, stamp your feet and yell. It is human! I think it is healthy to express your emotions, in a non-dangerous way! Name them, feel them, play with them for a bit, then put them down for a long nap!

There are many, many people here who are farther in the celiac journey, and they are so happy and willing to share patiently what they have learned. Just keep hanging out here and asking lots of questions. Maybe you'll become one of the next "veterans".

Best to you!

marilyn

[shannonbr]

Nicole,

We all went through a grieving process (here's a great post on that - Open Original Shared Link - but we got to the other side and so will you. I actually found help in Shauna Ahern's book, Gluten-Free Girl. It helped me realize that there were still many awesome foods that I CAN eat. We had chicken breast with a lemon, garlic and rosemary marinade, salad, and peach crumble for lunch. Not a lot of deprivation there

Shannon

[nvsmom]

Thanks Shannon and Marilyn. It is a "bitter sweet thing" isn't it? I'm one of the lucky unlucky ones who was easily diagnosed with blood tests. It's a shame I have it, and have had it for well over 30 years (grrrrr) but at least it's a disease that's treatable with just food! Last time I had an autoimmune disorder I was on steroids and had my spleen removed (ITP). This appears simpler... although the early learning curve is steep.

[Takala]

The benefits of a biopsy, (assuming it confirms) are that if you come back here in a few months saying you doubt that you really have celiac after all, and you're cheating on the gluten free diet, and considering going off of it, because it didn't make you feel much better, is that you have less of an excuse.

Some doctors will give you a hard time without it, others are more enlightened.

As for the cinnamon buns and pizza, all I can say is... Chebe mix !

[cyberprof]

I don't think you have to have the biopsy but the drawback is (unless your doc agrees to officially diagnose you based on blood results and positive reaction to diet) that you are not going to be an "official" celiac and your pediatrician may not agree to test your kid(s) based on your lack of defined diagnosis. Some people have a hard time convincing doctors that their kids need testing. And if you're officially diagnosed, your kids should be tested, as should your parents and siblings.

It won't show up on your medical records, so that might be a benefit if insurance companies discriminate against celiacs for life insurance etc.

[pianoland]

Welcome to the community. It's hard at first to take the news. But once you get used to the diet you realize, hey this isn't so bad. We can treat the disease by simply changing what we eat! No medications, no serious life altering illness, no surgery. I didn't get the biopsy because my doctor didn't feel it was necessary since my symptoms were resolved on a gluten free diet. I did get another blood test after 3 months to make sure my numbers were in the normal range. I'd recommend doing that.

On top of the switch not being so bad, you will start to feel better (you didn't mention if you had any symptoms but even if you are asymptomatic I bet you'll notice a difference in your general health).

You will find what works in your diet and realize you can still eat your favorite foods in a gluten free version, and you will be surprised that they're still delicious. If you have any questions this forum is a GREAT resource.

[nvsmom]

The benefits of a biopsy, (assuming it confirms) are that if you come back here in a few months saying you doubt that you really have celiac after all, and you're cheating on the gluten free diet, and considering going off of it, because it didn't make you feel much better, is that you have less of an excuse.

Some doctors will give you a hard time without it, others are more enlightened.

As for the cinnamon buns and pizza, all I can say is... Chebe mix !

Thanks Takala. That's kind of what I thought. Since I had a positive EMA, and an EXTREMELY positive tTg test, I can accept that I am celiac ... without a doubt. But I am dreading that test of will half a year from now when I'm out somewhere, symptom fee, and start wondering "how bad could one little bite be". KWIM?

And luckily my doctor is pretty enlightened. He doesn't seem to catch health problems on his own but if I go to him with information from "Dr. Google" he is willing to listen.

Nicole

[nvsmom]

I don't think you have to have the biopsy but the drawback is (unless your doc agrees to officially diagnose you based on blood results and positive reaction to diet) that you are not going to be an "official" celiac and your pediatrician may not agree to test your kid(s) based on your lack of defined diagnosis. Some people have a hard time convincing doctors that their kids need testing. And if you're officially diagnosed, your kids should be tested, as should your parents and siblings.

It won't show up on your medical records, so that might be a benefit if insurance companies discriminate against celiacs for life insurance etc.

Cyberprof - Thanks for the advice. My doctor called me celiac so I think it's official. when I went to him with a positive home test, even then he said that I was probably positive and said i would have to decide if I wanted the endoscopy. I don't.

We don't have a pediatrician, and my kids go to the same family doctor so I'm guessing it will be no problem to have them tested. - I actually had one son (with aspergers)tested already and I was told he was negative but I didn't get his results. Now that I know more, I'll get his results (they just test tTg, EMA, and IgA up here) and request genetic testing so I know if I have to keep retesting.

And darn it about the life insurance! Ours is up for renewal right now!

Nicole

[nvsmom]

Welcome to the community. It's hard at first to take the news. But once you get used to the diet you realize, hey this isn't so bad. We can treat the disease by simply changing what we eat! No medications, no serious life altering illness, no surgery. I didn't get the biopsy because my doctor didn't feel it was necessary since my symptoms were resolved on a gluten free diet. I did get another blood test after 3 months to make sure my numbers were in the normal range. I'd recommend doing that.

On top of the switch not being so bad, you will start to feel better (you didn't mention if you had any symptoms but even if you are asymptomatic I bet you'll notice a difference in your general health).

You will find what works in your diet and realize you can still eat your favorite foods in a gluten free version, and you will be surprised that they're still delicious. If you have any questions this forum is a GREAT resource.

Thanks for the welcome and supportive words, Pianoland.

I'll look into retesting in a few months. That's good advice.

I've had celiac symptoms for DECADES... I'm quite bitter about that. Accepting the diet is easier than swallowing the fact that if my childhood doctor had only taken my stomach aches seriously when I was a young girl, I could have led a much healthy and easier life. Instead, he said, "She is just one of those people who gets a stomach ache every time she eats." Yah, thanks... so helpful, Doc. Grr.

I am a pretty classic celiac. I'm pretty mad at myself too for not figuring this out sooner. (I went to my doctor and told him I am probably celiac so could he please test me.)

Since I haven't listed my symptoms anywhere else yet, I'll do it here:

• 
  
  
• Stomach aches after some (to all) meals since childhood.
  
• Constpation since babyhood.
  
• Abdominal (pianful) bloating.
  
• Fatigue since adolesence (I remember getting mono as a teen and it didn't make me feel that much worse than normal so I didn't realize it and I eventually ended up with pneumonia too ).
  
• ITP (idiopathic thrombocytopenic purpura - autoimmune disease) as a teen (spleen removed after steroids failed to control it). This means my white blood cells attached to my platelets (and your spleen kills whatever WBC's attach to) so I couldn't clot anymore.
  
• Joint pain - My knees always hurt and I get other sporadic joint pain; lately it's my shoulder and now it's tough to get my arm above my head. I had what appeared to be a rheumatoid arthritis attack for a few months as a young adult. My joints flared red and were swollen and some didn't work well... that was scary. I had a positive Rheumatoid factor (RF) test but it eventually resolved and they (docs) figured I didn't have RA. Also, I don't know if this is related, but I also have a bad back. I burst a disc in my back a few years ago and ended up with some paralysis down one leg... don't know about that one being relavent.
  
• Thinning hair.
  
• Mild, short lived cases of dh... I think.
  
• Stopped growing young (age 12 - but dad played pro football so I'm not petite ).
  
• Always hungry - I get the shakes if I don't eat every couple of hours.
  

If I can fix all that by just changing the foods I put into my mouth, I'll consider myself lucky... well sort of. I'll still miss my Grandma's recipe for cinnamon buns.

Nicole

[cyberprof]

Since I haven't listed my symptoms anywhere else yet, I'll do it here:

• Joint pain - My knees always hurt and I get other sporadic joint pain; lately it's my shoulder and now it's tough to get my arm above my head. I had what appeared to be a rheumatoid arthritis attack for a few months as a young adult. My joints flared red and were swollen and some didn't work well... that was scary. I had a positive Rheumatoid factor (RF) test but it eventually resolved and they (docs) figured I didn't have RA. Also, I don't know if this is related, but I also have a bad back. I burst a disc in my back a few years ago and ended up with some paralysis down one leg... don't know about that one being relavent.
  
• Stopped growing young (age 12 - but dad played pro football so I'm not petite ).
  
• Always hungry - I get the shakes if I don't eat every couple of hours.
  

Nicole, the docs thought that I had RA too for a while at 17, which is when my symptoms first becme known to me. And I was/am always hungry and also go the shakes if I don't eat - still even now. I guess 30+ years of undiagnosed celiac will do that.

Kinda funny story. My dad is 6'4" and I am 5'2" so I just assumed I took after other people. My son was 5'3" when he was 15 and his doc just told him he was going to be short like me. But my hubby is 6'1" and has only tall genes on his side of the family. Now DS is 6'3" (at age 19 and still growing) and he went back to see his childhood doctor...and towers over the 5'7" doctor. Not that there's anything wrong with being short but I had the last laugh on that one.

[nvsmom]

Nicole, the docs thought that I had RA too for a while at 17, which is when my symptoms first becme known to me. And I was/am always hungry and also go the shakes if I don't eat - still even now. I guess 30+ years of undiagnosed celiac will do that.

Kinda funny story. My dad is 6'4" and I am 5'2" so I just assumed I took after other people. My son was 5'3" when he was 15 and his doc just told him he was going to be short like me. But my hubby is 6'1" and has only tall genes on his side of the family. Now DS is 6'3" (at age 19 and still growing) and he went back to see his childhood doctor...and towers over the 5'7" doctor. Not that there's anything wrong with being short but I had the last laugh on that one.

Wow, it's amazing what celiac can (or at least really seems to) affect! I remember being so scared when that RA-like pain hit. That summer, when it had subsided a few months later, I climbed a mountain twice a week just because my body could. I remember feeling so thankful that I didn't have it at 19... wow, that was half a lifetime ago.

I like the story about your son. I worry about my oldest ds who is 9. He has tested negative for celiac thus far but he gets some stomach aches and he's often constipated... and he's getting short. He was a long baby, above the 75% as a toddler, still a tall preschooler but these past couple of years he's slowed right down (to 25 to 50%). I think his younger, 7 year old brother has now passed him, although I would NEVER put them back to back to compare. Granted, my 7 year old is tall, but so is my 4 year old, my husband is 6'1", and I'm 5'8" (despite growth stopping in grade 6), it's only my 9 year old who is a bit short.

[cyberprof]

Wow, it's amazing what celiac can (or at least really seems to) affect! I remember being so scared when that RA-like pain hit. That summer, when it had subsided a few months later, I climbed a mountain twice a week just because my body could. I remember feeling so thankful that I didn't have it at 19... wow, that was half a lifetime ago.

I like the story about your son. I worry about my oldest ds who is 9. He has tested negative for celiac thus far but he gets some stomach aches and he's often constipated... and he's getting short. He was a long baby, above the 75% as a toddler, still a tall preschooler but these past couple of years he's slowed right down (to 25 to 50%). I think his younger, 7 year old brother has now passed him, although I would NEVER put them back to back to compare. Granted, my 7 year old is tall, but so is my 4 year old, my husband is 6'1", and I'm 5'8" (despite growth stopping in grade 6), it's only my 9 year old who is a bit short.

Nicole, my son's story is similar to yours. He was 100 percentile in height and weight at birth, decreased to 75% in height after pneumonia (and unexplained stomach pain) put him in the hospital for 8 days at age four and then down from 75% to 25% from age 10-15.

I forgot to mention that I had a disk in my neck rupture when I was 27 and had some paralysis before the operation. Afterwards I had leg and arm numbness for years. Docs could never figure out what it was. I think it was a B vitamin deficiency, because it's gone now unless I don't take my supplements.

[nvsmom]

Nicole, my son's story is similar to yours. He was 100 percentile in height and weight at birth, decreased to 75% in height after pneumonia (and unexplained stomach pain) put him in the hospital for 8 days at age four and then down from 75% to 25% from age 10-15.

I forgot to mention that I had a disk in my neck rupture when I was 27 and had some paralysis before the operation. Afterwards I had leg and arm numbness for years. Docs could never figure out what it was. I think it was a B vitamin deficiency, because it's gone now unless I don't take my supplements.

wow... The similarities are pretty...disturbing!

My brother was also a huge kid. As I said before, my dad played defensive tackle on a pro football team so we had the genetics in the family to get big. My brother was off the charts for height and weight, shaving around age ten. The works. Poor guy stopped growing in junior high. Luckily he was already 5'10" so he wasn't,t small but dad was two inches taller. I wonder how big he could have become? He'sl looking into testing now.

[frieze]

Wow, it's amazing what celiac can (or at least really seems to) affect! I remember being so scared when that RA-like pain hit. That summer, when it had subsided a few months later, I climbed a mountain twice a week just because my body could. I remember feeling so thankful that I didn't have it at 19... wow, that was half a lifetime ago.

I like the story about your son. I worry about my oldest ds who is 9. He has tested negative for celiac thus far but he gets some stomach aches and he's often constipated... and he's getting short. He was a long baby, above the 75% as a toddler, still a tall preschooler but these past couple of years he's slowed right down (to 25 to 50%). I think his younger, 7 year old brother has now passed him, although I would NEVER put them back to back to compare. Granted, my 7 year old is tall, but so is my 4 year old, my husband is 6'1", and I'm 5'8" (despite growth stopping in grade 6), it's only my 9 year old who is a bit short.

If he were mine, he would be gluten free sooo fast his head would spin! at nine, perhaps he is old enough to understand the potential problem, and give it a good try? During the summer, so school wouldn't be involved. Do you really want to look him in the eye at 17 or so, when he is stalled out at your height, and say we "shoulda"?

[nvsmom]

If he were mine, he would be gluten free sooo fast his head would spin! at nine, perhaps he is old enough to understand the potential problem, and give it a good try? During the summer, so school wouldn't be involved. Do you really want to look him in the eye at 17 or so, when he is stalled out at your height, and say we "shoulda"?

I hear you. We're finishing off testing and then I'm easing them over into it with the assumption that even if his tests were negative (they are so far), that he is a latent celiac. He doesn't have discomfort or many symptoms so I'm going to take my time doing this so it's not a bad thing. Find recipes they like, ease them into it and then remove the last bits of gluten.