[Almedingen]

I come from a family of Celiacs. Half of us seem to be what I term "classic celiacs" - extremely thin, eating like horses, unexplained anemia, bad digestive problems, teeth falling out, etc.

The other half, seem to be like me -- no digestive problems, but when we eat gluten, we have severe bloating and are overweight, have horrible mood swings, and bad depression.

Does anyone else have this situation? I wish I could find more information on celiacs like me. I feel like a type of celiac that doesn't get much attention and not much is known about.

Any responses will be much appreciated.

[hapi2bgf]

Prior to my official diagnosis, I was always overweight by a good 20 pounds, depression, and anemia. After getting very ill and fighting for years to get a real diagnosis of something, I found that I have Celiacs. At that point I had the "text book Celiac biopsy". Now I find that I stay much thinner than ever before even though I probably eat more candy than ever before. The problem is in touching gluten I get surface sores of differnet types and maybe a little tiny digestive issue and that's it. BUT if I eat gluten, still a small digestive issue, but the mood swings, irritability, and skin problems last over a week and always lead to an argument with someone. So far I have found no easy way to deal with it or get over it. Good luck.

[gf4life]

My oldest boy is not a text book celiac either, and he is technically only gluten intolerant. His main symptoms from gluten are mood swings and depression and an inability to concentrate. He also has anger problems. He cries a lot and this drives my husband crazy, since he thinks 10 year old boys shouldn't cry. He almost never has GI comlaints from gluten, but he sure does from dairy!

I know that when I was younger I had mood swings very badly, and even though I still got them when I was older, I was able to handle them better. Now that I have been gluten-free since January I haven't had them so bad. Only when I get contaminated with gluten. I am also an overweight Celiac and have lost 20 lbs in the last 8 months. 40 more to go!!

My son has been able to focus better at school and get along with the other kids better. His teacher noticed a big improvement after about a month on the diet. He still gets the mood swings occasionally, but they are not as bad as they were and not as often. It certainly was an incentive to get his teacher to keep him on the diet at school. I just told her what he would be like if he got into some gluten and she was more than happy to comply!

You are not alone in this as a symptom. But I agree people with these symptoms tend to get overlooked, especially in the medical field. He would never have been diagnosed if I hadn't pushed for testing after I got my Enterolab diagnosis. As is, I ended up getting us all tested with Enterolab due to an insurance problem. But at least I have the support of the Ped. GI for all my kids. If I had just let it slide, thinking he is not really sick then I have a feeling the teenage years ahead of us would have been much harder than they should be now. He is already getting that pre-teen attitude and I can't imagine him with severe mood swings and depression all the time.

God bless,
Mariann

[Coulter]

Although the thin, anemic, very symptomatic celiac is the "classic celiac", it's not necessarily the most common. Bloating is one of the most common symptoms and if you run a search, you'll notice that depression, and mood swings are not at all unusual. Finally, if you look at the weight section, you'll notice that there are many more posts on losing than on gaining weight.

I was a pretty classic celiac: pale, underweight, vomiting, abdominal pains, bloating, loose stools, gas, and........whatever I forgot.

[Kathy_W]

I don't quite know what to say, but I have a twin sister with severe Celiac Sprue. I have Lupus, SLE, but I have a lot of the same symptoms that she has. My twin sister is very thin and I am very much overweight. I have the terrible bloating and severe diarrhea if I eat pasta or anything that contains glutan. I also have a serious eczema blistery rash on my hands and feet. Just yesterday the Lupus Specialist that I see for the Lupus told me that he was up against the wall, because he did not know what to do about my hands and feet and other severe problems. I can not drink milk at all or eat eggs without becoming acutely sick. I told him my symptoms and he shook his head and said that is it! Why didn't I think of that. He immediately ordered a test on me for some kind of antibodies in my blood. He told me that the glutan may very well be a big cause of the severe blistery eczema rash on my hands and feet. Well what do you think? I have to get on a glutan free diet. I am very new to this.

[miup2l8]

Although I had a lot of the "classic" symptoms, I too am overweight, have dealt with major depression and although I did not experience mood swings, I have been "grouchy" (politely termed by friends) for most of my life.
I used to be constantly hungry and would jokingly tell friends that I was really hyperactive and used those hyper tendencies to put things in my mouth !
A recent visit to a gastroenterologist resulted in him saying "It can't be too much a problem, as you don't seem to be losing weight" - how sarcastic of him!
Anyhow, after accidentally running across an article about celiac disease, I went gluten free in July and have lost 12 pounds so far and have far less cravings. Now that my system is actually retaining some nutrition from what I eat, I have found myself to be less hungry and am not constantly thinking about eating.
The counselor I'm presently seeing for depression is surprised by my cheerfulness and thinks that maybe this has been my problem all along.
Believe me - you are not alone in your symptoms - there are a lot of us out there!Good luck!
Donna

[Kathy_W]

Thank you so much for answering my post, because I thought I was going to go insane. Shoot I thought I was a hyperchondriac etc. I am very much overweight and my twin sister is very thin and tiny built. I am tall also. My twin sister has celiac disease but she does not ever get the nasty itchy blistery rash like I get. I also have Systemic Lupus. For years my sister kept telling me that I am glutan intolerant, but being the stubborn person that I am I refused to listen to her until the situation has truly gotten seriously desperate. This past weekend my twin came to visit me and again after a terrible day of constantly visiting the bathroom with horrible stomach cramps and severe diarrhea she got my attention. She told me to make an immediate appointment with my Lupus doctor and talk with him about what is going on and tell him about her having celiac disease and that she is my twin sister. I did that and I asked him if it could be possible that I am very glutan sensitive and if that could be causing this nasty rash I get. His mouth literally dropped openned and he said, "Why didn't I think of that"? He immediately ordered blood work on me to test for some type of antibodies. I also have a positive ANA antibody found in Lupus. My life has been a real nightmare and a lot of it is my own fault, because of being stubborn. I wish that I had listened to my sister years ago and then maybe my situation would not have gotten so totally out of control. I am very glad for this site. I am going to use the recipes from this site too.

[j9n]

I, too, was terrified of the endoscopy. It really freaked me out. I told the nurses and doctors I was frightened and they gave me more sedative. During the procedure I could not have cared less and actually don't remember much of it. Just tell your doctor your fears before hand. I did take a 6 hour nap afterwards though.
Are the red spots on your legs? I have those too and the last doctor I saw thought it was from my razor but when I went home I realized they were on the top of my foot too. I have shown them to two doctors and they both dismissed it. My platelet count is normal. I started using self tanning products to make them less noticeable except now I am afraid to go into a public pool in case my "tan" comes off in the water

[Kathy_W]

I talked with my twin sister, who has celiac disease that was confirmed by an intestinal biopsy several years ago as I too am very afraid of having that done to me. She assured me that it is not that bad and that they do sedate you. She said it only takes a few minutes to do and you don't feel it. She told me that the tube is not that big and that you really should not have a problem with breathing during the procedure. I hope that she is right. I think she is, because she has been through it. She made me mention my problems, because she scared me big time. She told me that if celiac disease goes untreated and you have it and do not go on a glutan free diet it can and will cost you your life. That got my attention big time.
Good luck to you and to me.

Kathleen

[tarnalberry]

Good luck Kathy. I haven't had a biopsy, but I've read about so many of them, and everyone says the same thing - not really that big of a deal. It sure does sound scary though, I know! I hope it goes well for you.

Your sister is right. Leaving celiac disease untreated is definitely bad for your health!

[Kathy_W]

Thank you Tiffany. I will have it done if I have to. I am afraid, because I don't want to end up dead. My sister told me that celiac disease that is left untreated can lead to your demise. I would not listen to my sister for a long time, because I guess I was in a state of denial. I thought man if I got this then I am in big trouble, because I like to eat unfortunately. I also have Lupus and that is a devestating illness too. I have that under control, but this problem with celiac disease is not under control and I have to get it under control too. I am trying to be glutan free, but have trouble finding foods that are glutan free. The regular grocery stores do not sell the special flours etc. I do definitely have to get this under control. I am sick of the many trips to the bathroom with severe episodes of diarrhea. I will post it if I have to have the biopsy done. Hopefully the blood test will show what is going on and I won't need the biopsy. Wish me luck.

Kathleen

[Coulter]

It's not bad at all........I had one in February and I'm scheduled for another on September 13th.......my advice in dealing with it is not to look it up on the internet or anything.......it's not that big a deal and it can be scary to read the details in articles. When you have it, they do one of two things: drug you so that you are somewhat out of it, but still partially conscious so you can help the doctor (for example, he says, roll on your side, and you can do that)......this seems to be the more commonly practiced way. Although you're technically conscious during the whole procedure, most people can't remember much if anything during the scope. I did it the second way: anystesia......they put you out completely and when you wake up it's done. Finally, don't worry about any pain. First, the piece of the intestine is so microscopic you cannot feel it missing -- if you think you do, it's in your head. Second, the only effects after having it are perhaps a sore throat (and I didn't have that when I was done). Third, you don't need to worry about gagging on the scope--they give you something that numbs your gag reflex or something. Don't worry about it, don't dwell on it, don't read about it; just go to the hospital and do it. Talk to your doctor about eating: I had mine in the morning and wasn't supposed to eat anything after midnight (midnight before biopsy). Although you'll be fine without it, good luck. One thing I'll warn you about. When you go into the procedure room, it's kinda scary cause there are all these machines and tools and whatever -- don't let it scare you.........they're not using all that stuff on you.

-Coulter