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3 Months Into Gfd: Dehydrated And Constipated
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Hi, fellow celiacs :)

I have some questions on how this celiac thing is going to work out. Hopefully there´s someone out there with a story similar to mine:

The first two and a half months on the gluten free diet, I felt crap basically. Two weeks ago I started sleeping less and being able to do more during the day. Then came this weekend and I am feeling crap again with balloon-belly and constipation. During the night I wake up every three hours because I am so thirsty and my mouth feels dried out. I then drink a litre or so of water, eat a couple of prunes to help get my system working, go to sleep again and repeat until morning.

I was diagnosed with celiac disease 3 months ago by gastroscopy with "moderate atrophy Marsh 3b". Anti-deaminated gliadin IgG was 49 in September 2012 (down to 11 in January this year). I am a male in his mid twenties. The celiac was discovered after me being ill and partially bedridden during two years, for what doctors thought was "postviral fatigue syndrome". I have no other known illnesses.

I regularly drink probiotics and try to keep a high-fibre diet. I work around two hours from home every day and do very little apart from that. If I talk too much I become hoarse and feel thirsty again. If I try to exercise more than a brief swim once a week, my limbs become heavy and I just start feeling incredibly tired. Staying out of bed then turns into an exercise in determination and self-discipline.

After years of being ill I want a social life, be able to do sports and to get ahead in my career like everyone else. WHEN will there be an end to this? WHY am I tired, constipated, bloated and extremely thirsty? HOW will I know if I am heading in the right direction recoverywise?

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I had delt with "C" for quite some time into the diet. Prunes helped a little, but not much. Doctor suggested more fiber <_< which didn't do a thing.

What i do when i get like this is to go for a walk. Exercise does help get things moving. I know its hard, but doing a little every day will be better in the long run than all at once.

Another thought is that there is something else that is triggering your body to act this way. Do you consume dairy? Perhaps try removing it to see if it helps any.

There are some on here that swear by flax seed. I've never tried it, but who knows?

As for the thirsty thing, have you been tested for diabities? That is one of the big symptoms for it.

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I tend to get dehydrated and find that coconut water is a good thing. I like a brand that is called "Coconut juice" or another brand called "blue Monkey." If you are use to sodas just consider that this is more like water. I am used to no sweets whatsoever and it has a wonderful sweet taste for me.

Your body might be cleaning out. My doctor explained to me last visit that their can be dry deposits which the body tries to clear. Hang in there and get a reasonable amount of water.

Diana

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Hi and thanks for your reply shadowicewolf!

I try to go for a 15-45 min walk every day according to how I feel. I found that if I overdo it, I´m struck with fatigue.

Another thought is that there is something else that is triggering your body to act this way. Do you consume dairy? Perhaps try removing it to see if it helps any.

I eat some cheese because I heard most celiacs would tolerate it. Maybe I should just skip the cheese altogether?

As for the thirsty thing, have you been tested for diabities? That is one of the big symptoms for it.

I was screened for it apparently, bloodwork shows my glucose level was 5,6 mmol/L (reference area: 4-6). Maybe I have some sort of reduced glucose tolerance? I think they never did thorough testing for it. The day after drinking a lot (1-2 litres?) of coke in order to stay awake during a social outing, I felt like crap. I felt OK during the outing though, maybe it was because of all the caffeine. I´ll mention it to my doctor

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I tend to get dehydrated and find that coconut water is a good thing. I like a brand that is called "Coconut juice" or another brand called "blue Monkey." If you are use to sodas just consider that this is more like water. I am used to no sweets whatsoever and it has a wonderful sweet taste for me.

Diana

Hi!

Is coconut water the same as coconut milk? Why would it be a good thing? Usually I don´t drink a lot of soda, but I do drink orange juice from time to time...

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No, coconut water is what comes out when you slash one in half.

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I am guessing you probably know this, and are just feeling frustrated by the gap between what you want and how things are at the moment, but not "everyone" has a great social life and does sports. That is, in fact, IMO, actually kind of rare, especially as you get older and take on more responsibilities. Things like TV and facebook make it seem like everyone's out there having fun but you, but that's not accurate. Which isn't to say your frustration isn't valid, but you may not be quite as far behind the curve as you think. Also, though some of your symptoms do sound medical, form a practical standpoint, if you have been sedentary for so long, even if you didn't have celiac, you'd probably take awhile to work your way up to being able to be active.

Did you get your vitamin levels checked when you were diagnosed? Any chance of deficiencies?

Have you established whether it was the celiac being your being partially bedridden for so long? You said you have no other *known* illnesses. What have you checked for? There could be more than celiac happening.

Also, are you on any medications that may have dry mouth and/or constipation as a side effect?

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I am guessing you probably know this, and are just feeling frustrated by the gap between what you want and how things are at the moment, but not "everyone" has a great social life and does sports. That is, in fact, IMO, actually kind of rare, especially as you get older and take on more responsibilities. Things like TV and facebook make it seem like everyone's out there having fun but you, but that's not accurate. Which isn't to say your frustration isn't valid, but you may not be quite as far behind the curve as you think. Also, though some of your symptoms do sound medical, form a practical standpoint, if you have been sedentary for so long, even if you didn't have celiac, you'd probably take awhile to work your way up to being able to be active.

You might be right, after all - what do I know, I sit at home all day:-)

Did you get your vitamin levels checked when you were diagnosed? Any chance of deficiencies?

No known deficiencies, B12, vitamin d etcetera are all normal.

Have you established whether it was the celiac being your being partially bedridden for so long? You said you have no other *known* illnesses. What have you checked for? There could be more than celiac happening.

I have been checked for borrelia, cytomegalovirus, hiv, herpes simplex, human herpes virus 6, hormone tests are normal, anti rf and ccp negative (rheumatoid factor), ANCA/MPO/PR3 negative, anti-native dna negative, ana negative, anti-adrenal glands <5 (normal), MR-brainscan normal. Glucose levels were 5,6, (ref. area 4-6) which should be normal, this was taken without fasting beforehand.

I mentioned me feeling exhausted, cold, constipated and dried out to my doctor on the phone today. She thought it probably was a cold or similar type of infection, since my blood work was fine. Should I get myself more thoroughly for diabetes? Any other diseases doctors might have forgotten?

Also, are you on any medications that may have dry mouth and/or constipation as a side effect?

I don´t take any medication, so that would surprise me.

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I have been checked for borrelia, cytomegalovirus, hiv, herpes simplex, human herpes virus 6, hormone tests are normal, anti rf and ccp negative (rheumatoid factor), ANCA/MPO/PR3 negative, anti-native dna negative, ana negative, anti-adrenal glands <5 (normal), MR-brainscan normal. Glucose levels were 5,6, (ref. area 4-6) which should be normal, this was taken without fasting beforehand.

I mentioned me feeling exhausted, cold, constipated and dried out to my doctor on the phone today. She thought it probably was a cold or similar type of infection, since my blood work was fine. Should I get myself more thoroughly for diabetes? Any other diseases doctors might have forgotten?

Have you gotten an A1C test for diabetes?

It sounds like you are being very thorough. I'm sorry you're not finding answers easily. Glad to hear you are feeling a little better the last couple of weeks- hopefully it progresses. :)

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Hi!

Is coconut water the same as coconut milk? Why would it be a good thing? Usually I don´t drink a lot of soda, but I do drink orange juice from time to time...

No, it is different from coconut milk. I think it hydrates better than water. It has extra nutrients (Potassium and Magnesium, I believe) , It is considered a sport drink, but it is without sugar. (Watch label) If you live in a tropical location you might get it straight from a young coconut. However, I buy 100% coconut water in a can. Last illness I kept drinking more and more water and yet I remained thirsty. Then I tried drinking the coconut water and it satisfied me.

I would think the sugar content in soda pop would make it counter productive for hydration. Orange juice also has alot of sugar. I haven't looked into the sugar content of coconut water, but I am going by its ability to satisfy my thirst.

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Have you gotten an A1C test for diabetes?

No I haven´t, but I was tested once for glucose without fasting beforehand and levels were normal then. Hopefully this is just part of the ups-and-downs of celiac recovery or just a bypassing infection in combination with celiac disease. If things don´t sort out this week I think I´ll ask for that HbA1c-test!

It sounds like you are being very thorough. I'm sorry you're not finding answers easily. Glad to hear you are feeling a little better the last couple of weeks- hopefully it progresses. :)

Well, it´s not me being thorough, it´s the doctors:) But one never knows if they missed something... and it´s hard to know what symptoms can be ascribed to celiac and what not. Maybe it´s just that am just susceptible to other infections during celiac recovery?

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No, it is different from coconut milk. I think it hydrates better than water. It has extra nutrients (Potassium and Magnesium, I believe) , It is considered a sport drink, but it is without sugar. (Watch label) If you live in a tropical location you might get it straight from a young coconut. However, I buy 100% coconut water in a can. Last illness I kept drinking more and more water and yet I remained thirsty. Then I tried drinking the coconut water and it satisfied me.

I would think the sugar content in soda pop would make it counter productive for hydration. Orange juice also has alot of sugar. I haven't looked into the sugar content of coconut water, but I am going by its ability to satisfy my thirst.

I also read that sugary drinks are bad for hydration. But why´s sugar so bad? If it´s important to stay away from sugar, maybe I should skip chocolate, bananas and orange juice altogether? I am in a snowy location, so coconuts only come in boxes with coconut milk around here - what could I use as substitute?

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I don't know if it is the case for you but once I went gluten free I started consuming more soy. It is in quite a few gluten free products. In myself it causes fatigue, constipation and joint and muscle pain. May not be an issue for you but thought I would toss it out as a possiblilty. Perhaps try eliminating soy as see if it helps.

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Have you had your tsh levels checked for your thyroid? ...exhausted, cold, constipated are all symptoms of under-active thyroid (hypothyroidism).

Could you keep a food diary and go and see a dietician?

Im only a month into the gfd and not feeling so on top form myself yet but guess it takes time and we all heal differently. Good luck :)

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Have you had your tsh levels checked for your thyroid? ...exhausted, cold, constipated are all symptoms of under-active thyroid (hypothyroidism).

TSH is normal, 1,53 mU/L.

Could you keep a food diary and go and see a dietician?

Good idea.

Im only a month into the gfd and not feeling so on top form myself yet but guess it takes time and we all heal differently. Good luck :)

Well, I am three months into the diet and still feel crap. My vili had marsh 3b damage but I don´t know if it's possible to predict anything by damage level. I guess you'll just have to hold out..

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When are your docs planning to have a follow-up blood draw to check how the antibodies to gluten are doing? You may also just plain still have gluten in your diet.

Are you still feeling some improvement?

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They did that end of January, antibodies had decreased significantly (halved themselves two times), and that indicates that everything is OK with the diet, according to the doctor.

There MIGHT be some improvement, but it's a little early to say... I HOPE so atleast.

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It's going to take a whole to build up your activity level. When I started working out I'd nap every day. Took about 2 months to get past that.

My doc told me to exercise no more than every other day. That said, my routine is different from yours.

Since you take a short walk daily, is there a way you could add just a bit to that? Start with mild some isometric exercises? Just one exercise per week, every other day? It may help to strengthen your muscles and give you more endurance.

I would advise a good gluten-free multivitamin. Generally, it helps Celiacs. We're usually missing something.

Do remember that your muscle tissue, ligaments, joints have been deprived of nutrients and are for lack of a better word, damaged. So take it easy on them. From the sounds of it, they're probably atrophied to a degree.

I will not lie. Rehabbing yourself in celiac recovery is a challenge. It's painful. We all recover at different speeds. I've learned to preface my health status with "today", or "right now".

The first 6 months-year of gluten-free is rough. You're relearning everything, and everything is constantly changing. Just keep going forward.

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It's going to take a whole to build up your activity level. When I started working out I'd nap every day. Took about 2 months to get past that.

My doc told me to exercise no more than every other day. That said, my routine is different from yours.

Since you take a short walk daily, is there a way you could add just a bit to that? Start with mild some isometric exercises? Just one exercise per week, every other day? It may help to strengthen your muscles and give you more endurance.

I would advise a good gluten-free multivitamin. Generally, it helps Celiacs. We're usually missing something.

Do remember that your muscle tissue, ligaments, joints have been deprived of nutrients and are for lack of a better word, damaged. So take it easy on them. From the sounds of it, they're probably atrophied to a degree.

I will not lie. Rehabbing yourself in celiac recovery is a challenge. It's painful. We all recover at different speeds. I've learned to preface my health status with "today", or "right now".

The first 6 months-year of gluten-free is rough. You're relearning everything, and everything is constantly changing. Just keep going forward.

Thank you for the encouragement. Good to hear that it takes some time. I do some back strengthening exercises, some pushups and situps, about every other day. But its to definitively to soon to try any large muscle group exercises like the deadlift or similar. It's definitively a rough ride. I'm mot missing any vitamins according to the tests, so that shouldn't be the problem.

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Your story sounds a lot like mine......

After going gluten-free my constipation became worse to the point where it was only an enema that would offer any relief. I was thirsty, thirsty, thirsty even getting up during the night to guzzle a full bottle of water. And tired, sleeping 10 to 12 hours a day. I had all vit levels checked...everything. Walking, prunes, more fiber, no processed foods, iron sups, B12 shots and on and on.

I am now at almost 3 years gluten-free (yeah!!) and feeling pretty darn good. This is just my thought..... but it just takes time. Time to heal. For so many years your body has been under attack and it needs time. Symptoms can change, reactions to different foods can change. It's all about healing. It sounds like you have done all of the right things, had all the levels checked and such.

Again, this is just my thought but sleep. Sleep as much as you need and heal. Your body is fighting to heal and that in itself is exhausting

.

Thirsty. Drink water. Lots. The doctor told me that I neede to drink more and I thought he was nuts. I mean, how much can one person drink?? He said that my body obviously needed more. At one point I drank as close to a gallon a day as I could. I (still) keep a jug in the refrig, refilling my sports bottle so that I can be sure to get my water quota. Thank goodness I like water but I know many people just don't. my partner is one that hates water. i don't get that. lol

Constipation....whew. That was my biggest issue and still plagues me to some point. I found a "cocktail" that worked for me and kept things moving (!). I drink aloe, take a probiotic,take powdered vitamins, drink an hebal tea for constipation. I was drinking the tea, which is really the only thing that worked, every night for about 8 months. Now I drink it about every three nights. I know that there are many that are opposed to taking a product to keep things "moving:, but my personal thought is that using something (as natural as possible) to keep things going is far better than the side affects of being backed up.

Guess that I am just trying to offer you some reassurance that it does and will get better. Someone on this board told me that the older you are when diagnosed and how long you have been suffering can make a huge difference on how long it takes to heal. Children can bounce back, adults take longer. For me the majic year was 2 years.

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Thank you for the encouragement. Good to hear that it takes some time. I do some back strengthening exercises, some pushups and situps, about every other day. But its to definitively to soon to try any large muscle group exercises like the deadlift or similar. It's definitively a rough ride. I'm mot missing any vitamins according to the tests, so that shouldn't be the problem.

I don't advise weights at this point. Your soft tissue probably can't handle it. Google isometrics, Pilates, stretching and start there. Don't think you can't push yourself doing those? I dare you :).

And regardless of what your labs say, you are deficient in vits/mins. They don't test for everything - there isn't a test for everything. That's celiac. Your intestines are not absorbing everything (if they were, you wouldn't have these issues). Try a multivitamin. Won't hurt you.

And if the exhaustion/constipation continues you need to see about Hashimotos testing for your thyroid. Just my $0.02.

I found progress happened slowly and became obvious overnight. I'd go weeks or months without feeling different. Then one day, whammo. Big step forward.

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I don't advise weights at this point. Your soft tissue probably can't handle it. Google isometrics, Pilates, stretching and start there. Don't think you can't push yourself doing those? I dare you :).

And regardless of what your labs say, you are deficient in vits/mins. They don't test for everything - there isn't a test for everything. That's celiac. Your intestines are not absorbing everything (if they were, you wouldn't have these issues). Try a multivitamin. Won't hurt you.

And if the exhaustion/constipation continues you need to see about Hashimotos testing for your thyroid. Just my $0.02.

I found progress happened slowly and became obvious overnight. I'd go weeks or months without feeling different. Then one day, whammo. Big step forward.

Tsh was normal, is there some other test for hashimotos I should ask for?

The constipation went away some days ago luckily. Trying to keep it that way now:) i think it must have been a cold because my mouth/throat seems less dry now, just hoping i wont catch another cold next time i step out of the door! Exhaustion still there though.

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Actually, the TSH doesn't tell you much about your thyroid function. The complete panel is:

Hypersensitive thyroid-stimulating hormone (TSH)

free thyroxine (fT4)

free triiodothyronine (fT3)

reverse T3 (rT3)

anti-thyroglobulin antibodies (anti-TG)

anti-thyroid peroxidase antibodies (anti-TPO)

fT4/fT3

fT3/rT3

Of these, those I have highlighted are the essentials; the others are the frosting on the cake if your doctor balks at running them all.

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Seems that they´ve tested me for this These are the results:

JANUARY:

TSH was 1,4 (0,2-4,0)

T4 was 19,9 (11,0-23,0)

T3 was 5,4 (3,5-6,5)

OCTOBER:

Anti-TPO negative.

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There is an autoimmune condition called sjongroen's (I think I spelled that correctly).  It causes dry mouth, eyes, and overall dryness of mucus membranes (joint pain and constipation can occur).  Since so many celiacs have more than one autoimmune condition, this might be part of what's going on.  I think the diagnosis is one of elimination of other disorders.  One of the famous Williams tennis sisters has this, but I don't remember which one.  I'm pretty sure I have both, but convincing my doctor has been difficult.  Treatment is usually just plenty of hydration.

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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
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