Little advice please

[Kj1987]

So tonight browsing facebook i stumbled across a post about coeliac disease and although id heard of it I only thought of it as a gluten intolerance and didnt know of any symptoms. So i did a bit of googling and i feel like some alarm bells are going off.

Im a 31 year old female and about 10 years ago I lost a lot of weight and was told i was anaemic. I also started having problems with headaches and (pressure in my ears/head) causing dizzy spells. Over the years  my struggles with headaches, dizziness, anxiety, depression, mood swings have become worse. I have lost my appetite but am probably classed as slightly overweight (i usually only eat once a day because my partner forces me). I often feel bloated and nausous (and i do vomit more frequently than anyone i know), i have been to the doctors numerous times with abdominal pain which is always put down as a water infection. I am always tired and have no energy which doctors have said is depression (but i really dont think i have anything to feel down about besides the constant headaches, brain fog and dizziness). Anyway after numerous diagnosis from the doctors they diagnosed me with menieres disease. (Which doesnt explain all my symptoms)

Looking online at some symptoms of coeliac disease i thought ‘yeah a lot of that relates to me’ But then there are a lot of symptoms different to mine that relate to my 12 year old son.

I took him to the doctors again recently as for as long as i can remember he has had trouble going to the toilet for a number 2. He can go well over a week without going and when he does they are massive. He has a spotty rash all over his bum and top of his legs. He bloats worse than i do and sometimes complains of a tummyache and headache. He wets the bed nearly every night. His behaviour is just getting worse, he bas terrible mood swings and starts crying for nothing but says its because he is tired. He again is slightly overweight and i am trying so hard to get help him shift this as i dont want him being picked on but he will not stop eating. He will have 5 meals a day, drink litres of water, snack in between and still cry if i say he cant have something. He says he is hungry and it is driving me crazy. We are on slimming world so I am trying to teach him to eat healthy and that we only need 3 meals a day and a few snacks but what can i do when he is sneaking food and so obsessed with it.

Anyway i went to the doctors a few years ago and they gave some laxative powder to put in water and it literally done nothing. The doctor said he had to eat more healthy so we have been. I took him back again and explained all of this to them and they sent us for blood tests which came back as ‘low iron’ which apparently they dont do anything for in children. I told the doctor that this doesnt explain all the other symptoms so she gave us tablets to stop him wetting the bed (which state not to take if you drink too much and he does).

Wouldnt the blood test have picked up coeliac disease? Should i push this further?

Or am i just over reacting because ive seen a few matching symptoms on google!

anyway if anyone can offer me any advice/opinions that would be great.

[ravenwoodglass]

Welcome to the board. You both should get celiac panels done. Do not go gluten free until all celiac testing is finished. That is very important as being gluten free will cause a false negative. Routine blood tests won't pick up celiac but it can pick up stuff like the anemia you both have and it is fairly common for the liver panels to be a bit off also. Some doctors don't realize that celiac can cause C so you may have to insist strongly with the doctors but much of what you and your son are dealing with could very well be celiac. I hope you get answers soon.

[Ennis-TX]

  On 9/10/2018 at 1:03 AM, Kj1987 said:

So tonight browsing facebook i stumbled across a post about coeliac disease and although id heard of it I only thought of it as a gluten intolerance and didnt know of any symptoms. So i did a bit of googling and i feel like some alarm bells are going off.

Im a 31 year old female and about 10 years ago I lost a lot of weight and was told i was anaemic. I also started having problems with headaches and (pressure in my ears/head) causing dizzy spells. Over the years  my struggles with headaches, dizziness, anxiety, depression, mood swings have become worse. I have lost my appetite but am probably classed as slightly overweight (i usually only eat once a day because my partner forces me). I often feel bloated and nausous (and i do vomit more frequently than anyone i know), i have been to the doctors numerous times with abdominal pain which is always put down as a water infection. I am always tired and have no energy which doctors have said is depression (but i really dont think i have anything to feel down about besides the constant headaches, brain fog and dizziness). Anyway after numerous diagnosis from the doctors they diagnosed me with menieres disease. (Which doesnt explain all my symptoms)

Looking online at some symptoms of coeliac disease i thought ‘yeah a lot of that relates to me’ But then there are a lot of symptoms different to mine that relate to my 12 year old son.

I took him to the doctors again recently as for as long as i can remember he has had trouble going to the toilet for a number 2. He can go well over a week without going and when he does they are massive. He has a spotty rash all over his bum and top of his legs. He bloats worse than i do and sometimes complains of a tummyache and headache. He wets the bed nearly every night. His behaviour is just getting worse, he bas terrible mood swings and starts crying for nothing but says its because he is tired. He again is slightly overweight and i am trying so hard to get help him shift this as i dont want him being picked on but he will not stop eating. He will have 5 meals a day, drink litres of water, snack in between and still cry if i say he cant have something. He says he is hungry and it is driving me crazy. We are on slimming world so I am trying to teach him to eat healthy and that we only need 3 meals a day and a few snacks but what can i do when he is sneaking food and so obsessed with it.

Anyway i went to the doctors a few years ago and they gave some laxative powder to put in water and it literally done nothing. The doctor said he had to eat more healthy so we have been. I took him back again and explained all of this to them and they sent us for blood tests which came back as ‘low iron’ which apparently they dont do anything for in children. I told the doctor that this doesnt explain all the other symptoms so she gave us tablets to stop him wetting the bed (which state not to take if you drink too much and he does).

Wouldnt the blood test have picked up coeliac disease? Should i push this further?

Or am i just over reacting because ive seen a few matching symptoms on google!

anyway if anyone can offer me any advice/opinions that would be great.

Expand Quote  

Sounds like celiac might be hit for both cases, it is genetic.
Constipation...I used to have that quite bad, always hungry, could go 3-11 days between BM...laxatives did nothing...entire box of exlax was candy with no BM, we later learned it was Magnesium Deficiency induced constipation, and the only thing tha worked was magnesium calm in some insane dose. You start off 1/4tsp (1-2g scales are great here) and up it another 2 grams a day til you get loose stools then back down 2 grams. dosing to tolerance. Your supposed to go daily little did I know back then lol. Now days I sort of wish I still had it, this disease changes, now days I get diarrhea for 6+ weeks after a crumb or gluten residue exposure...boy can it change on you (5+ years gluten free after a diagnosis)

His rash, might be DH, look it up and see if it matches.

Many issues with celiac can be compounded, IE the hunger, vomiting, headaches can be a combination of a immune response and vitamin deficiencies. Our damaged intestines do not absorb certain vitamins and minerals. B-vitamins, Magnesium, Vitamin D, and iron are all common, look up the deficiency symptoms to see what I mean. Supplementing can help alleviate some of the symptoms til you heal.

I wish you luck and can point you at things to help, BUT KEEP EATING GLUTEN daily til all testing is done.

Check the following links for testing.
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link

[Kj1987]

Thanks for the responses.

I took my soon to the GP yesterday (my appointments next week). We only managed to get an appointment for him because its the doctor no one will see because no one likes her. My mother argued with her last week but i thought how bad can she be.

We knocked the door before entering as you do, she didnt say come in so we just opened the door. She sat there staring at us, we sat down. 30 seconds of awkward silence, no hello or how can i help. So i said hiya, weve been bringing him for a while now for a few problems and after reading up on symptoms id like to get him tested for coeliacs? She still didnt speak. 

So i said, hes been constipated for years with bloated belly, belly pains, headaches, rash on bum, his behaviour, hes lethargic, and the last time we came and had blod tests they picked up low iron.

She stood up, signalled for my son to go by the bed, closed the curtain. He shouted Nooo, mammy. I quickly jumped in the curtain like ‘whats going on’ and there she is tugging at his trousers. I stood between the both if them and she muttered sonething about rash. So i was like its ok babe she just wants to look at your rash, pull your trousers down a bit and leave your boxers on and we will lift the leg up a bit. I have googled the rash showed my parents and partner and they all think its identical to his rash, she goes it just looks like itchy rash. (Wtf is itchy rash??)

She sits back down and tells me people with coeliac have diorhea not constipation (i said well ive read that their both symptoms)

Apparently all his other symptoms are just things that all boys have. So i said it might not be coeliac but its a coincidence that all the symptoms he have match and also i have an apolpointment as i have many symptoms aswell. (Also my sister has celiac disease) and its genetic. She told me that menieres disease has nothing to do with celiac disease. I told her i wasnt here to talk about myself or argue with her and that i wanted blood tests done or i wasnt going anywhere. 

She then tells me that looking at his symptoms she does agree that he should get tested and sent us to get bloods done on friday.

I just hope she isnt the doctor i see next week.

[ravenwoodglass]

  On 9/11/2018 at 10:33 AM, Kj1987 said:

Thanks for the responses.

I took my soon to the GP yesterday (my appointments next week). We only managed to get an appointment for him because its the doctor no one will see because no one likes her. My mother argued with her last week but i thought how bad can she be.

We knocked the door before entering as you do, she didnt say come in so we just opened the door. She sat there staring at us, we sat down. 30 seconds of awkward silence, no hello or how can i help. So i said hiya, weve been bringing him for a while now for a few problems and after reading up on symptoms id like to get him tested for coeliacs? She still didnt speak. 

So i said, hes been constipated for years with bloated belly, belly pains, headaches, rash on bum, his behaviour, hes lethargic, and the last time we came and had blod tests they picked up low iron.

She stood up, signalled for my son to go by the bed, closed the curtain. He shouted Nooo, mammy. I quickly jumped in the curtain like ‘whats going on’ and there she is tugging at his trousers. I stood between the both if them and she muttered sonething about rash. So i was like its ok babe she just wants to look at your rash, pull your trousers down a bit and leave your boxers on and we will lift the leg up a bit. I have googled the rash showed my parents and partner and they all think its identical to his rash, she goes it just looks like itchy rash. (Wtf is itchy rash??)

She sits back down and tells me people with coeliac have diorhea not constipation (i said well ive read that their both symptoms)

Apparently all his other symptoms are just things that all boys have. So i said it might not be coeliac but its a coincidence that all the symptoms he have match and also i have an apolpointment as i have many symptoms aswell. (Also my sister has celiac disease) and its genetic. She told me that menieres disease has nothing to do with celiac disease. I told her i wasnt here to talk about myself or argue with her and that i wanted blood tests done or i wasnt going anywhere. 

She then tells me that looking at his symptoms she does agree that he should get tested and sent us to get bloods done on friday.

I just hope she isnt the doctor i see next week.

Expand Quote  

Good for you Mom!  I hope she ordered a full panel and do be sure that you get a copy of those results.

[Ennis-TX]

  On 9/11/2018 at 10:33 AM, Kj1987 said:

Thanks for the responses.

I took my soon to the GP yesterday (my appointments next week). We only managed to get an appointment for him because its the doctor no one will see because no one likes her. My mother argued with her last week but i thought how bad can she be.

We knocked the door before entering as you do, she didnt say come in so we just opened the door. She sat there staring at us, we sat down. 30 seconds of awkward silence, no hello or how can i help. So i said hiya, weve been bringing him for a while now for a few problems and after reading up on symptoms id like to get him tested for coeliacs? She still didnt speak. 

So i said, hes been constipated for years with bloated belly, belly pains, headaches, rash on bum, his behaviour, hes lethargic, and the last time we came and had blod tests they picked up low iron.

She stood up, signalled for my son to go by the bed, closed the curtain. He shouted Nooo, mammy. I quickly jumped in the curtain like ‘whats going on’ and there she is tugging at his trousers. I stood between the both if them and she muttered sonething about rash. So i was like its ok babe she just wants to look at your rash, pull your trousers down a bit and leave your boxers on and we will lift the leg up a bit. I have googled the rash showed my parents and partner and they all think its identical to his rash, she goes it just looks like itchy rash. (Wtf is itchy rash??)

She sits back down and tells me people with coeliac have diorhea not constipation (i said well ive read that their both symptoms)

Apparently all his other symptoms are just things that all boys have. So i said it might not be coeliac but its a coincidence that all the symptoms he have match and also i have an apolpointment as i have many symptoms aswell. (Also my sister has celiac disease) and its genetic. She told me that menieres disease has nothing to do with celiac disease. I told her i wasnt here to talk about myself or argue with her and that i wanted blood tests done or i wasnt going anywhere. 

She then tells me that looking at his symptoms she does agree that he should get tested and sent us to get bloods done on friday.

I just hope she isnt the doctor i see next week.

Expand Quote  

I think you doctor has some disablities of their own. The mind set, etc. has me think you got one of those nightmare doctors. Many of us have had to change many doctors to get a proper diagnosis...I went through 5? or was it 4 and the 5th one got it...been to many years.

I think more people should think of a doctors office like a food/sells service...if your do not like how you are treated do not give them your money and go find another "store" doctors office.

Good you pushed it though, if she fails to do proper testing you can see about ordering your own test online for the blood test then finding a proper GI doctor to get the endoscope with.



 

[RMJ]

Do you live in the United States?  If so you may be able to order your own celiac blood panels online.

[Kj1987]

  On 9/11/2018 at 2:39 PM, RMJ said:

Do you live in the United States?  If so you may be able to order your own celiac blood panels online.

Expand Quote  

No i live in the UK