Fatigue And Celiac

[marycubs]

Hi all -

I'm new to this site but have read many helpful posts over the last few days. I'm glad to have found this site !

I have been having digestive problems (bloating, abdominal pain, change in bowels) for about a year and 1/2 as well as anemia, fatigue, headaches, low level depression. I was 'diagnosed' after a colonscopy as IBS, and my doctor was treating me for anemia seperately (I've been on iron supplements for a year, but have not had much improvement in my levels). He also felt my IBS was just 'emotional, stress related'.

I have never been very sure that IBS was an accurate diagnosis. After doing my own research I found out about celiac disease.. and the symptoms seem to reflect mine much more than IBS does. I have had a 'positive' celiac panel - I don't know what my levels were (I know that one part was 75 and the high end should be < 19; another was 41 when the level should be <19). I need to ask for a copy of the results, I guess. I went to a different Gastroentologist and he believes an endoscopy is warranted to check for celiac. I go in later this week.

My question is regarding the fatigue factor - I know that anemia, in itself, causes fatigue, low energy levels..but does celiac contribute to that symptom on its own, or is it due to being anemic ? I don't think anything else in my CBC showed low levels - but I don't know if the doctors have even asked for the right tests.. are there specific blood tests I should have? My experience so far is that it's up to me to ask, as the few doctors I have dealt with have not been very concerned.

thank you.

Mary

[celiac3270]

Fatigue is the most common form of celiac disease and anemia is also related to celiac. Celiac definitely contributes directly to fatigue, not only through anemia.

Also, many here were initially labeled as having IBS when in fact it was celiac.

Welcome!

[ianm]

I suffered from extreme fatigue and brain fog but I was not anemic.

[Emme999]

I am not anemic but if I had the option I could sleep all the time. Well... maybe not sleep, but at least lie there in bed and fantacize about it! My bf thinks I've got serious lazy issues, but I'm just tired a lot! It's not that I'm a slug (was taking 6 exercise classes/week at the Univ. until classes ended last week!) - but I've definitely got fatigue goin' on. Absofreakinlutely.

[Peaches503]

I could literally sleep for hours, I am so exhausted, and I even get 8-9 hours of sleep every night! But, still, I feel so fatigued and tired all day long. I never have energy, and I know that this is because of the celiac. You're not alone!

-Peaches

[Canadian Karen]

You are definitely not alone. Fatigue is a major problem for me. I could sleep 8 hours of deep sleep and wake up just as tired as when I went to bed.

Also, throughout the day, I get so tired I could just sleep anywhere. Even when I am driving on the highway going to Toronto, I literally have to slap myself in the face sometimes because I feel like I could just doze off. Not good when I have my four yr old twin boys in the back seat!

I am still trying to find a way to combat this.......

Karen

[KaitiUSA]

I am not anemic but boy was I ever tired. My trigger for celiac was mono. So when I had mono is where the fatigue started. I would sleep for 12 hours at night and still want to sleep. I would like to take naps in the day and that just wasn't me. Fatigue is actually a very common symptom of celiac.

My energy level has definitely picked up after getting on the diet.

[Wandering Hermit]

I am tired and brain-foggy too. Only been gluten-free for 4 weeks, with one accidental glutening at 2 weeks. And right after that my brain-fog really went up for a day or two.

[marycubs]

Thank you for your responses ! I hope to have a diagnosis soon and then may be able to go gluten-free and hopefully have less fatigue.

[Guest gfinnebraska]

That is one way I know if I have been "glutened." I can NOT lift my head off the pillow!!! I will go from the bed to the couch to the bed, etc. Ha! Since being gluten-free, I find I have a lot more energy. Hang in there, and you will too!!

[steadyed]

I have bouts of fatigue also, and I do dring a good bit of soda to help keep me going. But I do have to admit that it isn't constant. Also, many times when I'm doing something the adrenaline kick in helps, and afterwards I'm bushed. So I do like to keep busy .

It is interesting to read that fatigue is a common occurance in celiac disease. I contributed it to other factors.

Ed

[turtle99]

Hi everyone!

I'm new to this site and so amazed to find there are other people going through the same sort of thing I am. I've been borderline anemic, mild hypothyroidism, extremely sluggish and fatigued all the time. My digestion is just a battle field, making me so bloated I can hardly button my pants. My head is always in a fog and no matter how much I sleep I can't seem to wake up from the "hang over".

I also have a boyfriend who thinks it's all in my head. And my parents think that I'm unorganized and lazy. It's so difficult when no one understands and think that I'm making excuses.

I've been wheat-free since 2000.

I will be doing the blood test this week and then after that no matter what, I'm going on a strict gluten free diet. I don't want to spend another day burdening my body with gluten if this is it, and it's the only way I know, is to try it.

[Peaches503]

Hi Turtle99,

I feel your pain! And, I can sympathize with the parental annoyance. I've lost some weight in the past 5 years, and I know that I've only had celiac for a year (severe emotinal stress triggered it last May) and my parents think that I need to eat, eat, eat! Anytime I say I'm tired or that something else related to the disease is wrong, which is all the time, they say "you need to eat" but I'm not hungry, it's just the disease. I hope that you get everything all straightened out as far as the disease and stuff. I just wish my parents would support me rather than tell me what to do, I'm a grown woman after all (I'm 22 years old)!

-Peaches

[turtle99]

Hi Peaches,

Parents always have a hard time treating their children like adults. My diet has become too different from theirs, so I often eat separately. My digestion is better when I can eat quietly without people around talking about negative garbage.

I guess "eat, eat , eat" mean "love,love, love". Is your appetite still poor after going gluten-free?

[Peaches503]

Hi Turtle,

I can understand what you mean. My parents just care about me, I know. It's just that my appetite has not changed. I eat the same amount I have always eaten, not to mention that at this point in life, many people's bodies are still going through changes, so even without celiac, my body was changing. I just wish we could find a happy medium (my parents and I). They also don't understand that I too like to eat in a quiet atmosphere, and the times I like to eat are not necessarily the same time that they may want to eat. I just don't know how to make them understand me without making them feel like I'm pushing them out of my life.

-Peaches

[klmitchell]

Hi Peaches,

I am very familiar with the parental pressures! I went vegetarian at a very young age and it's still a struggle. They don't understand that I don't want to "contaminate" my food with meat. With things like tomato sauce, they don't understand why I won't eat it if meat was cooked in it. I'm going to a GI tomorrow because I think I may have Celiac...this will make dealing with them even more difficult! The best advice I can offer is to just sit them down and explain that this is all part of the disease. Print out articles if it will help and educate them on the effects Celiac has on your body. Possibly even schedule an appointment for all of you to talk to your doctor and have him explain it to them. Maybe once they are educated, they won't get on your case so much. Good luck!

[Peaches503]

Thanks for the advice, I do appreciate it. The problem is, my parents are very educated about this disease, however, they've always been on my case because I'm just not a big eater. Sometimes I get the feeling that they think I am purposely starving myself when in reality, I'm just not hungry. I would never let myself go hungry, and I eat when I feel hungry. They're just always on my case, and I really can't take the pressure. It has only gotten worse since I have been diagnosed with celiac disease. It's been 5 weeks and they think that because I'm not feeling better yet that it's because of my eating habits. I don't think they understand that it's going to take a lot of time for me to really heal. I think they are also concerned becase in 5 years, I've lost about 15-17 pounds. However, they don't know that before I lost the wieght, I gained 10 pounds after coming out of a mild eating disorder when I was about 16. Not to mention I was a late bloomer. So, the weight loss thing freaks them out, even though I lost the weight before my celiac disease was activated. I just feel like I need to vent all of this. Thanks for listening, or shall I say reading!

-Peaches

[SabrinaLuvsGluten]

I am also extremely tired ALL the time. Its really hard because I have two small children to take care of, and they are only 13 months apart! Also, the brain fog thing has been a BIG issue with me over the last few years. I couldnt even remember my youngest son's name the other day when I was showing a friend of mine pictures of my boys! Talk about embarrassing...

Sabrina

[ianm]

Sabrina, my son was born in 1995 and that was when my celiac began to rage out of control. It was so hard to deal with the fatigue and brain fog and the added stress of a newborn. I barely remember the first seven years of his life. It will get better, it just takes time.

[turtle99]

Hi Peaches,

I totally understand the struggle with trying to get parents to understand. But after hearing about your previous eating disorder, I can see why they are so worried about you. however, I also see that pressuring you to eat, doesn't help to make eating a pleasureable experience. What about the other important things, like, how is your energy level, how is your mood, how is your digestion, how are the other parts of your life? If you know your parents are over reacting that's one thing. But if you may be possibly depriving yourself of sufficient nutrients and calories, then you really should check it out with a nutritionist/dietition.

It's so important to take care of yourself, and live as full a life as you can! I'm still learning how to do this. Sometimes I get to focused on one area of my life that I think is not going well, and I forget there there are other things that are bothering me too. Because all the other stresses can affect our health too, ie. appetite. I'm still fustrated with my health and trying to unravel is mystery but I feel like I'm getting closer to finding the root of it.

It's really so worth it !

[Peaches503]

Hi Turtle99,

Thank you so much for responding! Being able to talk about this stuff really helps ease my stress, even if it's just to get things off of my mind. I know that my parents care, but the thing is, I'm not a stupid girl. I consider myself extremely intelligent, and I know what I need to do to take care of myself. I could never actually starve myself, even if I wanted to. I love eating way to much. Though I did go through a rough patch when I was younger, things have gotten way better since then. I think that was a lot of adolescence issues. However, I'm the kind of person who likes to know that they can do things on their own, and when my parents try to help, I just feel like saying "I know what I need to do. Let me do it on my own", but at the same time, I need them to support me.

You are also right about eating being unpleasant. I'm a college student, and whenever I'm away at school, my eating habits do not stress me at all, and I just eat however I feel like eating. But, when I'm home, I know that my parents are watching every little thing I do, and because of this, I think I subconsciously avoid eating altogether, and this probably makes them more worried! My symptoms of celiac disease have not gotten better since being diagnosed, in fact, I feel worse, but I think this could just be because of my adjustment to the new diet. I really am trying very hard to do this diet right. But, I have had electrolyte and hormone levels and all that stuff checked out-they are all ok, so it really seems that I'm pretty healthy and that I caught my celiac disease early on. So, my parents are justified in worrying about me, I just wish that they could know that I'm not inflicting any harm upon myself by not eating. I'm eating how I feel comfortable, and my doctor says I'm generally healthy as can be at this point, but I think my parents think that eating more will make me all better. I think that eating the same amount but just eating better foods will help me. How do I get them to understand?

I'm going to suggest that they join this support group so that they can read and educate themselves so that they will know how best to help me. This place has helped me so much, and my boyfriend is just getting into it to so that he can also support me and help me. Any suggestions for what to do about my parents would be appreciated - from anyone!

-Peaches