Can Celiac Disease Be Intermittent?

[Sarah Alli]

It sounds weird, I know. But bear (bare? hmm) with me.

I've been tired pretty much my whole life. Whenever anyone asked me, even as a kid, how I was doing, it was always... "I'm tired." As a teenager I developed severe insomnia. I take meds for that and definitely get enough sleep but I still crawl home from work every day feeling like I fought a war. I can't seem to hold down a full time job and the only reason I can work enough to live is that my (part time) job pays pretty well and I can do most of it from a desk without moving much. I get these bizarre spells of extreme fatigue and confusion that I couldn't even put a name to until I saw it described on a celiac board as "brain fog" - so apt!

Last summer, going through a rough patch in my life, I started having pretty extreme stomach pains. I went through all the usual tests and nothing came back abnormal except a low vitamin D, which is pretty much baseline for northern people. I told the doc about the fatigue and I got tested for mono, thyroid, etc. Still nothing. I couldn't eat much and I lost quite a bit of weight, but I didn't know what to do. Summer came and went, personal issues mostly went away and took the stomach pain with them. I chalked it up to stress and moved on.

A few months ago, they came back, with a vengeance. A late night emergency room visit and subsequent doctor visits, blood/urine tests, ultrasounds have all yielded nothing. There's a pile of medical bills on my bed that I received just in the last week, totaling $1,200. It would be much, much more if I didn't have insurance and financial assistance from the hospital. The pain has subsided somewhat but it is still significant, and my fatigue seems to worsen every day. A doctor suggested I try exercise so I've been taking the stairs- all 11 stories- to work. I'm sad to report that that does not help- instead makes me weak, shaking, and freezing cold even when it's hot out. Those symptoms are new and the first to truly scare me.

Anyway, my mom's best friend and a handful of other people in my life (no family, though) are celiac and it floated around in my mind for a while that the symptoms matched. My doctor agreed and ran a blood panel, which came back negative (tTG IGG & IGA was <2 U/mL, total IGA was 171 mg/dL). The doctor suggested I either trial a gluten free diet or see a gastroenterologist. I decided to try the diet but a few days later I got a horrible reaction after eating a salad and took that as an excuse to stop the diet because I got sick off of something that was gluten free.

All that was about a month ago. My stomach pain subsides then comes back- it really seems to vary a lot. One week I'll be fine, the next my stomach will be so tender even a light touch is unbearable. I have no other gastrointestinal symptoms, but I do have a small, circular rash in two spots on my hand and one spot on my lower leg. Super itchy, and presumed to be eczema, but definitely could be dermatitis herpatiformis. Like the stomach pain, it comes and goes and doesn't seem to be related to diet.

So, my question is- did anyone here experience something like that; the intermittent symptoms, and get better on a gluten free diet? I can't afford to keep going to the doctor and my research tells me that even biopsies have a high false negative rate. My fiance is pushing me to try the diet again- he can't stand to see me so miserable but I am terrified of it. I really need someone to tell me that I'm not insane, if that makes sense.

[rosetapper23]

One of the hallmarks of celiac is that symptoms can wax and wane throughout one's ilfetime. There were periods in my life when I felt almost completely well. You might be reacting to more than just gluten, and many people go on an elimination diet that eliminates gluten, dairy, soy, and sometimes corn. I'm sure others will chime in with additional advice.

Now, as for your feeling cold and shaky after climbing stairs, that sounds a lot like hypoglycemia to me. Try eating a banana a few minutes before you climb stairs or do other exercises. Especially after starting a gluten-free diet, you have to remember that if you cut out grains, you're cutting out a large number of carbs that your body is used to consuming. That can cause temporary hypoglycemia when combined with exercise. Fruits are good at pumping in needed glucose at these times (banana, orange juice, an apple, etc.). Just my two cents....

[Judy3]

Hi there,

I was diagnosed with Celiac last year and I'm 53 yrs old. I've had intermittent stomach issues all my life, hypoglycemia since I was 6, change to Diabetic at 40, now back to hypoglycemia. I have the genes so my doctors tell me I've had this all my life but in a 'mild' form and on and off. They also said that was a common thing which is why people are not being diagnosed until later in life. The medical field is finally taking note of us and realizing that all their wrong diagnosis were in fact just that "wrong". I don't think that we know enough about it to say that one person's symptoms 'can not be Celiac' and another person's can... My advise to you would be to go gluten free and try it.. stick to whole foods, make your own salad dressings etc... and see if you don't feel better. If you don't after a month then you should look for other answers. I'm not a doctor but just from my life experience I wish I would have tried gluten free a long time ago.. but who knew.

Good Luck and eat the banana!!!

[ElseB]

There is such thing as non Celiac gluten intolerance. People test negative for Celiac, but nevertheless have a very real intolerance to gluten. The treatment is the same: gluten free diet.

[IrishHeart]

Well, kiddo--many of your symptoms sound like mine--the freezing cold in summer thing??--and feeling weak with exercise, hypoglycemia, fatigue, insomnia, foggy head, itchy ...etc....

so, certainly gluten may be an issue for you.

Blood tests are often Negative--you'll read that a lot on here. Mine were, but I have celiac nonetheless.

A strict gluten-free trial--try it for a few months--may give you the answer. If your symptoms abate, then you know.

Best wishes!!

[viviendoparajesus]

gluten intolerance and celiacs have a lot of symptoms that are not gi symptoms. i have had periods when i felt better and worse before i got the right diagnosis. i am still trying to figure out what i should eat and what all is going on and how to best handle it. however, i felt better and had symptom relief when i went gluten-free. in some ways i like the tests because the symptoms did not always correspond with my having gluten sometimes it was delayed and i did not know there was a connection so it helped provide evidence of a problem. but the false negatives with tests and some requiring having gluten to get accurate results can be frustrating and for some people make it better and easier just to go gluten-free and see what happens. i have hypoglycemia and it sounds like you might have it too since you get weak and shaking. the feeling cold all the time also sounds like me and i was diagnosed with thyroid problems. however i did not need medication to fix it according to dr kharrazian's book (why do i still have thyroid symptoms) going off gluten can help the thyroid and only some people get better on/ need thyroid medication. best wishes.

[Sarah Alli]

One of the hallmarks of celiac is that symptoms can wax and wane throughout one's ilfetime. There were periods in my life when I felt almost completely well. You might be reacting to more than just gluten, and many people go on an elimination diet that eliminates gluten, dairy, soy, and sometimes corn. I'm sure others will chime in with additional advice.

Now, as for your feeling cold and shaky after climbing stairs, that sounds a lot like hypoglycemia to me. Try eating a banana a few minutes before you climb stairs or do other exercises. Especially after starting a gluten-free diet, you have to remember that if you cut out grains, you're cutting out a large number of carbs that your body is used to consuming. That can cause temporary hypoglycemia when combined with exercise. Fruits are good at pumping in needed glucose at these times (banana, orange juice, an apple, etc.). Just my two cents....

Ok, I will definitely try that. I sometimes don't have enough to eat for breakfast. I occasionally have a hot chocolate in the morning which is also a nice little injection of glucose as well- though perhaps not the healthiest method of obtaining it. Lactose doesn't generally sit well with me, either, though the thought of cutting out dairy is far more painful than cutting out gluten. I'll cross that particular bridge when I get to it.

Hi there,

I was diagnosed with Celiac last year and I'm 53 yrs old. I've had intermittent stomach issues all my life, hypoglycemia since I was 6, change to Diabetic at 40, now back to hypoglycemia. I have the genes so my doctors tell me I've had this all my life but in a 'mild' form and on and off. They also said that was a common thing which is why people are not being diagnosed until later in life. The medical field is finally taking note of us and realizing that all their wrong diagnosis were in fact just that "wrong". I don't think that we know enough about it to say that one person's symptoms 'can not be Celiac' and another person's can... My advise to you would be to go gluten free and try it.. stick to whole foods, make your own salad dressings etc... and see if you don't feel better. If you don't after a month then you should look for other answers. I'm not a doctor but just from my life experience I wish I would have tried gluten free a long time ago.. but who knew.

Good Luck and eat the banana!!!

Thanks for your fond wishes! Reading stories about people who are midlife who have spent their whole lives searching for answers makes me sad. It does seem that I'm lucky in that I'm dealing with this in a time that people are finally starting to talk about food allergies and intolerances and the wide-ranging effects they have on us.

There is such thing as non Celiac gluten intolerance. People test negative for Celiac, but nevertheless have a very real intolerance to gluten. The treatment is the same: gluten free diet.

Hmm, I wonder what the actual difference between those things are. Perhaps while Celiac is an autoimmune response, non-celiac gluten intolerance is more like lactose intolerance. Or, it seems more likely, non-celiac gluten intolerance is just Celiac that for some reason isn't showing up in tests. It doesn't seem like doctors know very much about this disease.

Well, kiddo--many of your symptoms sound like mine--the freezing cold in summer thing??--and feeling weak with exercise, hypoglycemia, fatigue, insomnia, foggy head, itchy ...etc....

so, certainly gluten may be an issue for you.

Blood tests are often Negative--you'll read that a lot on here. Mine were, but I have celiac nonetheless.

A strict gluten-free trial--try it for a few months--may give you the answer. If your symptoms abate, then you know.

Best wishes!!

Yes- even my doctor warned me about the high rate of false negatives for the blood tests. I would guess that's one of the reason so many people go undiagnosed.

gluten intolerance and celiacs have a lot of symptoms that are not gi symptoms. i have had periods when i felt better and worse before i got the right diagnosis. i am still trying to figure out what i should eat and what all is going on and how to best handle it. however, i felt better and had symptom relief when i went gluten-free. in some ways i like the tests because the symptoms did not always correspond with my having gluten sometimes it was delayed and i did not know there was a connection so it helped provide evidence of a problem. but the false negatives with tests and some requiring having gluten to get accurate results can be frustrating and for some people make it better and easier just to go gluten-free and see what happens. i have hypoglycemia and it sounds like you might have it too since you get weak and shaking. the feeling cold all the time also sounds like me and i was diagnosed with thyroid problems. however i did not need medication to fix it according to dr kharrazian's book (why do i still have thyroid symptoms) going off gluten can help the thyroid and only some people get better on/ need thyroid medication. best wishes.

Hmm, I had a thyroid panel done a while back and it came back normal. They checked specifically because I have a family history of hypothyroidism which matches a lot of my symptoms. Glad to hear that the symptoms can be delayed- there have been times I can trace episodes back to a specific time I ate a lot of gluten (like the time I woke up screaming with cramps after dinner with my fiance's aunt and her dangerous fried bread tacos) and other times, like the pain I have right now despite having no gluten for over 24 hours.

One of the guys at the place I work is Celiac- he told me how he stopped eating gluten based on a suggestion from a friend. When it helped, he went to the doctor who wanted him to do a gluten trial so they could run tests to be sure. His wife told him she'd leave if he started eating gluten again, so he decided to pass on the tests! If my symptoms go away with this diet- that'll be enough for me. I would never put myself through eating something I know is poison just to get a test result that tells me what I already know. Seems a little masochistic to me.

Thanks for all the advice and fond wishes. It's really nice to get a reminder that there are other people like me, dealing with bizarre illness, that got answers and are feeling better. Thank you!!

[Di2011]

I am awaiting my first test.

I am tired always

I am a serious night owl

I itch a lot lately ( I quit my job in the bakery a couple of days ago)

I can't afford serious medical attention & tests.

I hate that after 38 years I have to think about me. My son and family, school activities, work are much more interesting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I remember when I lived alone in an apartment (21-25 y/old) and I don't think there was a loaf of bread that would have come in the door in those years.... I ran to work, had friends over for stir-fry & rice dinner etc and I had guys wanting to date me like crazy Now I just want to feel okay and that time was so small compared to the rest.

I wish this thing wasn't so INSIDIOUS... what a good word for it

[Mummyto3]

I'm currently awaiting my Celiac results. I'm almost certain I have it. My 9yr old has been diagnosed and a family history of bowel problems. I get severe stomach pains whenever I'm stressed. I get bloated occasionally, have intermittant constipation, extreme fatigue, underactive thyroid and anemia. I also have 'brain fog'. Some days when I'm really really fatigued I often struggle to concentrate and keep staring into space for ages, before pulling myself out of it. Other days I'm tired but functional, they're the better days. Have had my bloods done for anemia and thryroid too.

[GFinDC]

It is not unusual to have a period of adjustment to the gluten-free diet. It can seem like things are going backwards at times instead of getting better. Many of us stop dairy at first as it can cause symptoms to be worse. Some people can resume dairy after a while.

It is good to keep your diet very simple at first also. Avoid processed foods and eat whole foods that you cook yourself. Limiting the number of different foods / ingredients that you put in your body each day gives you a shorter list to review. People eating lots processed foods are taking in a variety pack of ingredients and it is hard to determine which of a 100 things is causing a problem. If you only eat 3 or 4 foods in a day you have a much easier time of identifying problems.

[IrishHeart]

A good reason to quit dairy (lactose) while you recover your gut function is that lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

For those of us with more gut damage, it is almost a "must" to avoid dairy at first. If you do not progress quickly by eliminating just gluten, dairy may be the culprit.

Not be "mother hennish" But just having hot chocolate for breakfast is not going to help the glucose levels one bit. That's why you are feeling the way you do. It feels like a "boost" at first, then it wears off and then, you are shaky and weak (been there, done that! ) I was walking on a treadmill and passed out. Why? I was too sick and had no appetite (before I was diagnosed) to eat breakfast, so I didn't eat anything. My glucose levels were so erratic. (not anymore!)

You need PROTEIN and good carbs, kiddo, especially in the morning. You need some FUEL!!

Best wishes!!

[Sarah Alli]

I am awaiting my first test.

I am tired always

I am a serious night owl

I itch a lot lately ( I quit my job in the bakery a couple of days ago)

I can't afford serious medical attention & tests.

I hate that after 38 years I have to think about me. My son and family, school activities, work are much more interesting!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I remember when I lived alone in an apartment (21-25 y/old) and I don't think there was a loaf of bread that would have come in the door in those years.... I ran to work, had friends over for stir-fry & rice dinner etc and I had guys wanting to date me like crazy Now I just want to feel okay and that time was so small compared to the rest.

I wish this thing wasn't so INSIDIOUS... what a good word for it

Yes!! Insidious is a good word.

My test came back negative- I understand that false negatives are quite common. So don't be too disappointed if yours is negative too.

I'm currently awaiting my Celiac results. I'm almost certain I have it. My 9yr old has been diagnosed and a family history of bowel problems. I get severe stomach pains whenever I'm stressed. I get bloated occasionally, have intermittant constipation, extreme fatigue, underactive thyroid and anemia. I also have 'brain fog'. Some days when I'm really really fatigued I often struggle to concentrate and keep staring into space for ages, before pulling myself out of it. Other days I'm tired but functional, they're the better days. Have had my bloods done for anemia and thryroid too.

Yeah, the fatigue really is the worst. It's so hard to do anything when all I want to do is sleep- but when I lay down I just toss and turn! It all feels so unproductive.

It is not unusual to have a period of adjustment to the gluten-free diet. It can seem like things are going backwards at times instead of getting better. Many of us stop dairy at first as it can cause symptoms to be worse. Some people can resume dairy after a while.

It is good to keep your diet very simple at first also. Avoid processed foods and eat whole foods that you cook yourself. Limiting the number of different foods / ingredients that you put in your body each day gives you a shorter list to review. People eating lots processed foods are taking in a variety pack of ingredients and it is hard to determine which of a 100 things is causing a problem. If you only eat 3 or 4 foods in a day you have a much easier time of identifying problems.

A good reason to quit dairy (lactose) while you recover your gut function is that lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

For those of us with more gut damage, it is almost a "must" to avoid dairy at first. If you do not progress quickly by eliminating just gluten, dairy may be the culprit.

Not be "mother hennish" But just having hot chocolate for breakfast is not going to help the glucose levels one bit. That's why you are feeling the way you do. It feels like a "boost" at first, then it wears off and then, you are shaky and weak (been there, done that! ) I was walking on a treadmill and passed out. Why? I was too sick and had no appetite (before I was diagnosed) to eat breakfast, so I didn't eat anything. My glucose levels were so erratic. (not anymore!)

You need PROTEIN and good carbs, kiddo, especially in the morning. You need some FUEL!!

Best wishes!!

Hee hee, sorry if I wasn't clear... I would never just have hot chocolate for breakfast! I would be dying of hunger an hour later if that's all I ate. My normal breakfast consists of rice chex with lots of fresh strawberries and lactose-free milk. This morning I had a scrambled egg, a pear, and a glass of (lactose free...) milk.

I do know that celiac can cause short term lactose intolerance. I noticed I wasn't handling lactose as well about a year ago and switched to lactose free milk. I also try to choose cheeses that are aged because they have less lactose. Ice cream is a weakness of mine, unfortunately.