Do You Have To Be Anemic To Have celiac disease?

[BeckyW]

Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

[SueC]

Anemia is just one possible symptom of celiac. It is not necessary to be anemic to have celiac disease. Your doctor is misinformed

An immediate reaction is also a commom thing. With an elevated tTg she has celiac disease and the biopsy will tell you how damanged her bowel is. Start her on the gluten free lifestyle. She will feel better but it may take awhile. Tell her to stick with it. It is not easy at first but will get much easier with time and as she starts to feel better she will realize it is worth it.

Good luck yo you and your daughter, I hope she feels better soon.

[jerseyangel]

Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

Hi Becky--welcome to the board!

You do not have to be anemic to have Celiac. Anemia is a common symptom, but it is certainly possible to have Celiac without it. People feel the effects of gluten anytime from immediately, to a day or so later--sometimes longer. It varies greatly from person to person. 20-30 minutes is not unusual at all. Doctors seem to always want that positive biopsy, but I tend to think the positive bloodwork is proof enough. If the gluten-free diet is helping her, that is further proof. The biopsy can also miss the affected areas. Keep in mind that there are some 200 symptoms of Celiac--doctors looking for the "classic case" are a big reason this disease is so under diagnosed. No matter what the outcome of the biopsy, I hope that your daughter will listen to her body, and go completely gluten-free right now and begin to heal. I was not diagnosed until last year at age 49. I have a lot of problems stemming from being undiagnosed for many years.

I would sugest reading through some of the old posts--there is a lot of great information here! Always feel free to post with any questions you or your daughter may have. We have a forum here for teenagers--if it's ok with you, she may want to check that out. There are lots of kind, knowledgeable people here who have been through this and would be glad to help.

[mart]

Hi Becky. Sorry your doctor is so misinformed. My son was very sick, thin, and his villi was completely flat. Yet he wasn't the least bit anemic. Some celiacs don't have flattened villi, yet they are anemic. Go figure! Was this doctor a gastroenterologist? You need to find a good one, would be nice if he was very knowledgeable about celiac disease. Please start your daughter on a complete gluten free diet. She will get better soon. Could be weeks or months, but some people start to feel better right away. Hope she heals quickly!

[elonwy]

I've never been Anemic in my life. If anything, I lean the other way, as does my mother, who also has Celiac. My doctor said I couldn't have it without family history, I demanded the test anyway, and then we find out after that, other people including my mother have it and had no idea. They don't know everything.

I also often feel sick immediatly after eating gluten, sometimes even before I'm done eating, so that's a load of hooey too. My most immediate reaction was about 3 minutes after I had taken a bite of the wrong appetizer I threw up. Sorry your doctor is being a pain.

Good luck.

Elonwy

[skoki-mom]

Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

Pretty much ditto what the others said. My sister (celiac disease) was so anemic when she was diagnosed she nearly needed a transfusion. I was not anemic at all, and never have been. celiac disease can present in many ways, or in my case, not at all. I am definitely not "classic". I hope your DD feels better soon.

[Kaycee]

I am one of those who has not been anaemic with coeliac.

I have at times been low in my iron levels, as when I was pregnant with my children. I needed to take spplements then. Last year before diagnosis my iron levels were low, but nothing to worry about, but I opted to take an iron supplement, so by the time I was diagnosed earlier this year.

So yes you don't need to be anaemic to be coeliac.

Cathy

[Ursa Major]

Hi Becky! Your doctor is apparently quite ignorant of celiac disease. All last summer, before figuring out I have celiac disease and went gluten free, my food went right through me within at the most 30 minutes every time, no matter what I ate. When your villi are severely damaged, that will happen. And of course, as others said, some people with celiac disease are anemic, while others are not.

If the biopsy has been taken, it's time to go back to being completely gluten-free, no time to waste! Your daughter needs to get well, so she can enjoy her summer with her friends and feel better.

The positive blood test combined with the diet improvement is really all the evidence you need, to know she has celiac disease.

[Girl Ninja]

It seems to me we're sort of like snowflakes. So many variations on the theme! My main symptoms were migraines and hives. Other symptoms would come and go, but I got hives and headaches almost every day. I don't believe I was ever anemic.

[flagbabyds]

they told me that i couldn't have it just because i was constipated, yes this was 14 years ago, but still, there are SO many symptoms of celiac, that you really can't diagnose someone by just one symptom that they don't have, you have to look at the big picture.

About the soon after eating stuff, it could be that she already has gluten in her system and that her intestines are damaged, and whenever she eats anything she will get sick, it doesn't matter if it is gluten or not.

Hops she gets a diagnosis soon, and I am 16(on wed!) and if she needs a teen to talk to i can talk to her about the diet if she is diagnosed.

[BeckyW]

Thank you all for your replies, help and support! This message board is just wonderful. I have learned more from everyone than the doctor!

This is the second doctor I took my daugther to and he was much better than the first. The first said she was anorexic and I told him he was wrong! Hopefully we will find out the biopsy results the beginning of this week.

She tested positive on the tTg and the Endomysial AB, IgA screen with a none detected Endo, IgA Titer. Can anyone explain the tests alittle more? The new doctor did more testing and I think he did five tests.

My daughter is so thin and was dehydrated (I think that is better now) but if she gets dehydrated again they want to hospitalize her. My second question is how do you eat and drink when everything makes your stomach hurt, gasey and bloated?

My third question is is there anything to do when your stomach feels so full and you are bloated?

She was gluten free a few days before the scope then the day before the doctor wanted her to eat the gluten. She has not had any since Thursday so we are only basically on day 3 of gluten-free. The waiting to see improvement is so hard!

Molly - my daughter has tried to IM you and it shows you are on a cell phone and it won't go through. Is there any way for her to email or IM you? I think it will help alot for her to talk to another teen with the same problem.

Thank you all for your help! I really appreciate it.

Becky

[Ursa Major]

Becky, most celiacs are initially dairy intolerant.........some can have dairy again after about a year, when the villi are healed enough to produce lactase to digest the dairy.

The bloating could be due to dairy, even off gluten. Try eliminating dairy and see if that helps.

Why don't you have your daughter sign up here as well, and post in the teen forum (or wherever she likes, of course)? Then she can just pm Molly, or post and get lots of responses. She wouldn't feel so alone then.