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3 Months Into Gfd: Dehydrated And Constipated

dehydration constipation recovery time thirst bloated tummy prognosis 20s

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#1 funkflex

 
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Posted 03 February 2013 - 02:40 PM

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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#2 shadowicewolf

 
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Posted 03 February 2013 - 05:38 PM

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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#3 1desperateladysaved

 
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Posted 03 February 2013 - 06:51 PM

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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#4 funkflex

 
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Posted 03 February 2013 - 09:43 PM

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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#5 funkflex

 
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Posted 03 February 2013 - 09:46 PM

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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#6 mushroom

 
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Posted 03 February 2013 - 10:21 PM

No, coconut water is what comes out when you slash one in half.
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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#7 Em314

 
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Posted 04 February 2013 - 04:50 AM

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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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#8 funkflex

 
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Posted 04 February 2013 - 12:16 PM

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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#9 Em314

 
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Posted 05 February 2013 - 04:22 AM

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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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#10 1desperateladysaved

 
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Posted 05 February 2013 - 04:58 AM

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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#11 funkflex

 
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Posted 05 February 2013 - 05:34 AM

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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#12 funkflex

 
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Posted 05 February 2013 - 05:50 AM

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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#13 ravenwoodglass

 
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Posted 06 February 2013 - 06:58 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
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celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
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HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 VeggieGal

 
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Posted 06 February 2013 - 12:28 PM

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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#15 funkflex

 
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Posted 07 February 2013 - 02:39 AM

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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