Does Anyone Else Get These Symptoms

[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

[celiac3270]

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.

[Guest barbara3675]

This is an interesting discussion as my granddaughter has celiac disease and as I have had a major problem with migraines and depression over my lifetime plus bloating and a very tender tummy at times, my DIL suggested I have the blood test (I didn't go glutenfree until after the test). The test was negative (the doctor was very skeptical of me when I suggested it---no big surprise there) I did go gluten free after the test and don't really find it all that hard as I have been cooking/shopping for Ana since she was one...she is six now and the picture of health. I have been eating gluten-free for about three weeks now and was still very constipated and tummy tender, however, all my food cravings went away. I had lost 60# a couple of years ago and put 20 of it back on recently.....much to my distress. Now I eat so much less food/am in so much more control of my eating life. I also have fibromyalgia and in researching that on the internet, there OFTEN seems to be some connection between that kind of pain and a gluten intolerance or at least a wheat allergy. I am going to stay eating gluten-free and see how it all shakes out. I really don't find it to be much of a hardship (yet anyway) and appreciate how much more in control I feel regarding food cravings. I know I will take off the unwelcome weight that I have put on as I am eating things that are very good for me now. We are also having my 86 year old mother tested as she has had lots of gastro troubles.....if she should test positive, then I would be sandwiched between my granddaughter and mom which would make me VERY suspicious of the negative test result I had. Barbara

[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.

[Guest Nukapai]

I had anemia when I was a child, always some stomach problems, later diagnosed lactose intolerant (which I may have been from birth) - then diagnosed with IBS about 9 years ago. Then I also became emetophobic and later developed general anxiety disorder.

About 5 years ago I also started losing hair, developed a rash on my arms (not exzema type, more like hair follicles that turn to itchy spots and leave scars when scratched), hormone problems (was given hormone therapy) and depression.

In the last few months I've had totally debilitating migraines that include all the worst symptoms of migraine and can knock me out for 2 days at a time.

Three weeks ago, I first noticed tiny bright red spots just under my skin - they look like someone has accidentally sprayed paint on me or something. I've always bruised really easily and I always have some pretty bad looking bruises on my legs where I've brushed past something and haven't even noticed that I might get a bruise.

Couple of weeks ago I became very ill and lost all appetite. Had continuous nausea and diarrhea for days and couldn't eat much. My stomach felt as if it was *burning* and it was swollen and so sensitive that even touching the skin over the top hurt a bit. I also had bad bowel cramps, so naturally assumed it was IBS flaring up. I started losing a lot of weight and felt constantly exhausted.

I went to my doctor and he prescribed anti-depressants and Colofac and signed me off work for 2 weeks.

I was talking to a friend of mine last week and when I was describing my hellish couple of weeks he suddenly said: "hey, wait a minute, someone I know suffered exactly the same symptoms and it turned out he had coeliac disease."

I decided to experiment and have now been gluten-free for 3 days. The diarrhea stopped (although my stomach is still a little swollen and my guts are making audible noises whenever I eat ... pretty embarrassing), and I don't seem to be able to eat *much*, but I am at least eating something solid and that's a huge improvement. I no longer have the burning sensation in my stomach either.

I guess I need to go back to the doctor and ask to be tested for coeliac disease. But I am TERRIFIED of the thought of endoscopy. I wonder if a blood test will be enough?

[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

[Guest Nukapai]

Yes, I do have some red spots on my legs too, but there are so few (for now at least!) that they have not really caused concern. I've always had some on my arms, but in the last few weeks the amount suddenly increased almost overnight.

So the sedatives can really be that effective? I don't mind the procedure in principle, but I have a really strong gag reflex and problems with my airways anyway (mildly asthmatic and chronic catarrh) so I just can't imagine being able to comply to the procedure.

[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

[celiac3270]

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.

-celiac3270

[Kathy-W]

Thank you so much celiac3270. I do feel better about it. I will let everyone know what is going on. I think I will find out on the 2nd of next month when I go back to the Rheumatologist. My twin sister told me the same thing, because she knows I panic very easily.

Kathleen

[Brittany2]

Curious, I had those weird under the skin paint looking spots too, they were numerous, tiny and just randomly grouping on my feet and lower legs. The first time I got them was when I was getting in adequate sleep, they suddenly developed one night and stuck around for three days. The hospital didnt know since I went at that same time with back pain and jitters. The spots would return at odd times, usually when I would not get adequate sleep from working on my art so much. After awhile though feeling so horrible and entirely worried about the dots I was unsure. They disappeared when I improved my diet and stopped eating so much quick "college" food (sandwiches, pasta, pizza etc) Yet my stamina was not quite the same after that.

A couple months later my hair started to fall out, and a little before that my heels became horribly dry and cracked. I knew something was the matter but couldn't figure it out. After somehow getting ring worm on my neck, my dermatologist checked my iron and thyroid levels for the hair loss to find close to anemic and lower thyroid levels (around 32). Which led me to do research, in a weird coincidence I searched for the odd spots and found a blog with someone talking about how they had them then found out they had Celiac. I never heard of Celiac so I did tons of research after that, amazed at the similarities, convinced it was what has been plaguing me so much.

I had the classic symptoms, unexplained fatigue that at first I thought it was from sleep deprivation and so did the doctors that I saw, but even during break when I slept a ton I never felt totally rested. So after finding out about Celiac, I tried to get tests, luckily having a good personal doctor he ordered them, which was only a TTG at the lvl of 8, not enough to diagnose. From there I went to two Digestive disorder doctors which the second was wonderful and allowed me to get a biopsy, but that too showed no damage.

Well at that point I decided to take things into my own hands, especially with family history of autoimmune disorders and a great grandma with small bowel cancer. I started being gluten free, and since in only a week I've felt amazing. Its weird to me but I'm so happy, my energy has returned, symptoms are gone, dry skin is healing on my heels, and my eye sight oddly went back to my old prescription of glasses from two years ago (I only got new ones back in March). So despite the negative tests, it only seems logical, being only 19 there probably was hardly any evidence of damage yet, especially with symptoms only showing up the past year and a half. I had my psychology teacher tell us once that when you don't get adequate sleep your bodies weakest link goes out. That must of been what happened. I'm glad to have caught it.

[wellerval]

This is an interesting discussion as my granddaughter has celiac disease and as I have had a major problem with migraines and depression over my lifetime plus bloating and a very tender tummy at times, my DIL suggested I have the blood test (I didn't go glutenfree until after the test). The test was negative (the doctor was very skeptical of me when I suggested it---no big surprise there) I did go gluten free after the test and don't really find it all that hard as I have been cooking/shopping for Ana since she was one...she is six now and the picture of health. I have been eating gluten-free for about three weeks now and was still very constipated and tummy tender, however, all my food cravings went away. I had lost 60# a couple of years ago and put 20 of it back on recently.....much to my distress. Now I eat so much less food/am in so much more control of my eating life. I also have fibromyalgia and in researching that on the internet, there OFTEN seems to be some connection between that kind of pain and a gluten intolerance or at least a wheat allergy. I am going to stay eating gluten-free and see how it all shakes out. I really don't find it to be much of a hardship (yet anyway) and appreciate how much more in control I feel regarding food cravings. I know I will take off the unwelcome weight that I have put on as I am eating things that are very good for me now. We are also having my 86 year old mother tested as she has had lots of gastro troubles.....if she should test positive, then I would be sandwiched between my granddaughter and mom which would make me VERY suspicious of the negative test result I had. Barbara

Hi Barbara,

I am wondering if you have had Vitamin D testing done, as that can lead to Fibromyalgia-like pains, kind of like calcium is being pulled out of your bones.... The test you want is called 25(OH)D. Most lab's stated reference range is 32 - 100 ng/mL, but most of the experts suggest 55-70 ng/mL for optimal health. If you are below 40 ng/mL, you may want to consider supplementing about 10,000 IU/day with 1,500 mg of calcium. This would bring your D level up within a few weeks, I would think. We use a liquid D supplement that is 2,000 IU per drop, making it very easy to take. It is made by Rx Vitamins, but I am sure there are other brands out there.

Best of luck to you,

Leslie