I need some advice

[vita1]

Hello!

I'm 17(turning 18 after 2 months) year old female and I think that I might have celiac disease. I found out about this disease recently and many of my symptoms matched with its description. My main symptoms are: 

• Constipation/ diarrhoea - sometimes I am constipated for more than 5 days ( I don't usually pay attention to how long I am constipated, since its happening so often that I am used to it) and then other times I have diarrhoea which happens at least once per month.
• Headaches - I have had irregular headaches for about 4 years. They used to be not as bad but with years they are appearing more often. Usually these headaches go away after day or two. The latest one felt kind of like a migraine and lasted for two days.
• Acne - I never actually had that much problem with acne but for last year(maybe little bit more) it's been bothering me a lot. It's not so much facial acne, it's more on my legs, back, shoulders, chest and buttocks. These pimples appeared out of nowhere. And with time were getting worse. Oh, and they are itchy too, sometimes.
• Bloating - I've noticed that whenever I would eat something that contains gluten, like bread, I would get bloated. Sometimes I would get sharp abdominal pain out of blue but they didn't last that long.
• Sleep problems - For about 3 years I've had problems with sleep. When it started I was going through some stuff, so that might have been the reason for it at beginning. I have problems falling asleep, I go to bed and can't fall asleep for 20min-3h. That's the biggest problem with that, I just can not fall asleep. But even if I had only 4 hours of sleep the next day I feel good and rested. But there are exceptions - once in a blue moon I sleep for about 17 hours straight. 
• Mood swings/Irritability - Now, about this one I don't know how much it has to do with who I am and how much with what I eat. But I definitely have been more and more irritable. I get so irritated so easily, it's kind of frustrating.    

So, those are the main symptoms that I have and that are common with celiac disease. Some other things include: I am very pale but I've been pale since forever. I recently fainted and I often have the feeling that I am going to faint but I always manage to sit down before that happens. Sometimes I feel very fatigue even though I haven't done that much that day. Recently my eyelid and toes have been twitching which probably has nothing to do with this. Oh, almost completely forgot, I kind of have brain fog. Mostly I just can't remember things that I know I know, I mess up words while talking, I forget what I was doing or thinking about doing and sometimes I can't remember certain words.

Thats about it. The reason for making this post is to hear from other people who are actually diagnosed with celiac disease or who have more knowledge about it. I just need to now if there is a possibility of me having a celiac disease and if there is a reason to actually go and get tested for it. I am from Latvia and in here the tests are quite pricey and since I don't have my own incomes, yet, I don't want to waste my parents money. Because of that reason I have stopped eating gluten containing foods at all for almost 3 weeks and some of my symptoms are already fading, for example I haven't been that constipated nor have I had diarrhoea, my acne is slowly getting better, I feel better and more happy and I fell asleep almost as soon as I went to bed(but that might be because I have a cold).

To sum it up, what I would like to hear from you is if you think that there is a possibility I might have celiac disease or gluten sensitivity and if I should save up money for the test. So all I actually need is just some advice on what to do whit this. 

P.s. Since I am from Latvia and English is my second language, I am sorry if there are any mistakes in this post.

[Fundog]

Yes, you should save up money to get the testing done.  However, when you are ready for the tests, you need to eat gluten for three months before the tests, or they will not be accurate.   Good luck!

[suzanne2217]

14 hours ago, vita1 said:

Hello!

I'm 17(turning 18 after 2 months) year old female and I think that I might have celiac disease. I found out about this disease recently and many of my symptoms matched with its description. My main symptoms are: 

• Constipation/ diarrhoea - sometimes I am constipated for more than 5 days ( I don't usually pay attention to how long I am constipated, since its happening so often that I am used to it) and then other times I have diarrhoea which happens at least once per month.
• Headaches - I have had irregular headaches for about 4 years. They used to be not as bad but with years they are appearing more often. Usually these headaches go away after day or two. The latest one felt kind of like a migraine and lasted for two days.
• Acne - I never actually had that much problem with acne but for last year(maybe little bit more) it's been bothering me a lot. It's not so much facial acne, it's more on my legs, back, shoulders, chest and buttocks. These pimples appeared out of nowhere. And with time were getting worse. Oh, and they are itchy too, sometimes.
• Bloating - I've noticed that whenever I would eat something that contains gluten, like bread, I would get bloated. Sometimes I would get sharp abdominal pain out of blue but they didn't last that long.
• Sleep problems - For about 3 years I've had problems with sleep. When it started I was going through some stuff, so that might have been the reason for it at beginning. I have problems falling asleep, I go to bed and can't fall asleep for 20min-3h. That's the biggest problem with that, I just can not fall asleep. But even if I had only 4 hours of sleep the next day I feel good and rested. But there are exceptions - once in a blue moon I sleep for about 17 hours straight. 
• Mood swings/Irritability - Now, about this one I don't know how much it has to do with who I am and how much with what I eat. But I definitely have been more and more irritable. I get so irritated so easily, it's kind of frustrating.    

So, those are the main symptoms that I have and that are common with celiac disease. Some other things include: I am very pale but I've been pale since forever. I recently fainted and I often have the feeling that I am going to faint but I always manage to sit down before that happens. Sometimes I feel very fatigue even though I haven't done that much that day. Recently my eyelid and toes have been twitching which probably has nothing to do with this. Oh, almost completely forgot, I kind of have brain fog. Mostly I just can't remember things that I know I know, I mess up words while talking, I forget what I was doing or thinking about doing and sometimes I can't remember certain words.

Thats about it. The reason for making this post is to hear from other people who are actually diagnosed with celiac disease or who have more knowledge about it. I just need to now if there is a possibility of me having a celiac disease and if there is a reason to actually go and get tested for it. I am from Latvia and in here the tests are quite pricey and since I don't have my own incomes, yet, I don't want to waste my parents money. Because of that reason I have stopped eating gluten containing foods at all for almost 3 weeks and some of my symptoms are already fading, for example I haven't been that constipated nor have I had diarrhoea, my acne is slowly getting better, I feel better and more happy and I fell asleep almost as soon as I went to bed(but that might be because I have a cold).

To sum it up, what I would like to hear from you is if you think that there is a possibility I might have celiac disease or gluten sensitivity and if I should save up money for the test. So all I actually need is just some advice on what to do whit this. 

P.s. Since I am from Latvia and English is my second language, I am sorry if there are any mistakes in this post.

Hi have you been to see a doctor I would.  And yes get a blood test to test for it. Might not be but I would see a doctor with your symptoms.  All the best good luck

[Jmg]

Hi vita1 and welcome 

I agree with fundog, testing is worthwhile, even though there is no treatment other than the gluten free diet, there are many good reasons for finding out if you have celiac.  There are some links and further info here which may prove useful:

 

Part of me wants you to go back on gluten right now, as he longer you are off it the harder the time you may have when undergoing a gluten challenge. However I respect your not wishing to take money for  your parents and it does you great credit. 

In the meantime, there are still things you can do to help improve your knowledge of how diet may affect you.  You can keep a food diary, writing down what you eat and when and how you feel. That may help you track how symptoms improve as your diet changes. You can take photos of your skin problems to track how they react.  All this is useful evidence, because you may be like me, testing negative, but still reacting to gluten. If that's the case your diary will help establish this and help you maintain the diet if needed.

I had many of your symptoms bar the headaches and they mostly resolved or improved under a gluten-free diet. I found that dairy had a big impact on skin, so you may want to consider that as a factor also.

i hope you find this community as useful, supportive and welcoming as I have.

best of luck  

matt

 

[vita1]

Thank you, everyone, for the replays.

I haven't been to doctors yet, but I think that I am going to go soon. But until I have money for the tests I probably just won't use gluten because I do feel better and I don't want to have those symptoms worsen or just reappear for no reason (because I don't have the money and couldn't get tested even if I wanted).

But thank you once again for your advices.   

[Jmg]

14 minutes ago, vita1 said:

Thank you, everyone, for the replays.

I haven't been to doctors yet, but I think that I am going to go soon. But until I have money for the tests I probably just won't use gluten because I do feel better and I don't want to have those symptoms worsen or just reappear for no reason (because I don't have the money and couldn't get tested even if I wanted).

But thank you once again for your advices.   

You're most welcome

Being gluten free takes a bit of practice. Remember to check ingredients, gluten is in a LOT of things which you wouldn't expect. Be wary of contamination from pots and pans, wooden cooking utensils etc. Try and eat fresh food rather than processed. Keep a food diary also!

[Aly46]

On ‎8‎/‎18‎/‎2016 at 3:25 PM, vita1 said:

Hello!

I'm 17(turning 18 after 2 months) year old female and I think that I might have celiac disease. I found out about this disease recently and many of my symptoms matched with its description. My main symptoms are: 

• Constipation/ diarrhoea - sometimes I am constipated for more than 5 days ( I don't usually pay attention to how long I am constipated, since its happening so often that I am used to it) and then other times I have diarrhoea which happens at least once per month.
• Headaches - I have had irregular headaches for about 4 years. They used to be not as bad but with years they are appearing more often. Usually these headaches go away after day or two. The latest one felt kind of like a migraine and lasted for two days.
• Acne - I never actually had that much problem with acne but for last year(maybe little bit more) it's been bothering me a lot. It's not so much facial acne, it's more on my legs, back, shoulders, chest and buttocks. These pimples appeared out of nowhere. And with time were getting worse. Oh, and they are itchy too, sometimes.
• Bloating - I've noticed that whenever I would eat something that contains gluten, like bread, I would get bloated. Sometimes I would get sharp abdominal pain out of blue but they didn't last that long.
• Sleep problems - For about 3 years I've had problems with sleep. When it started I was going through some stuff, so that might have been the reason for it at beginning. I have problems falling asleep, I go to bed and can't fall asleep for 20min-3h. That's the biggest problem with that, I just can not fall asleep. But even if I had only 4 hours of sleep the next day I feel good and rested. But there are exceptions - once in a blue moon I sleep for about 17 hours straight. 
• Mood swings/Irritability - Now, about this one I don't know how much it has to do with who I am and how much with what I eat. But I definitely have been more and more irritable. I get so irritated so easily, it's kind of frustrating.    

So, those are the main symptoms that I have and that are common with celiac disease. Some other things include: I am very pale but I've been pale since forever. I recently fainted and I often have the feeling that I am going to faint but I always manage to sit down before that happens. Sometimes I feel very fatigue even though I haven't done that much that day. Recently my eyelid and toes have been twitching which probably has nothing to do with this. Oh, almost completely forgot, I kind of have brain fog. Mostly I just can't remember things that I know I know, I mess up words while talking, I forget what I was doing or thinking about doing and sometimes I can't remember certain words.

Thats about it. The reason for making this post is to hear from other people who are actually diagnosed with celiac disease or who have more knowledge about it. I just need to now if there is a possibility of me having a celiac disease and if there is a reason to actually go and get tested for it. I am from Latvia and in here the tests are quite pricey and since I don't have my own incomes, yet, I don't want to waste my parents money. Because of that reason I have stopped eating gluten containing foods at all for almost 3 weeks and some of my symptoms are already fading, for example I haven't been that constipated nor have I had diarrhoea, my acne is slowly getting better, I feel better and more happy and I fell asleep almost as soon as I went to bed(but that might be because I have a cold).

To sum it up, what I would like to hear from you is if you think that there is a possibility I might have celiac disease or gluten sensitivity and if I should save up money for the test. So all I actually need is just some advice on what to do whit this. 

P.s. Since I am from Latvia and English is my second language, I am sorry if there are any mistakes in this post.

Hi There! I am Aly and I have suffered seriously for about 4 years with an huge increase in symptoms. I just recently started a gluten free diet a few months ago and I am sure I make mistakes because I feel it when I do. Your symptoms are a lot like mine and after many blood tests and visits to Neurologist still no answers. They diagnosed with relapse/remission MS for all these years and now say its not that. It's Auto-immune but no answers. They never tested me for Celiac's but A friend suggested I try going gluten free. Here are my symptoms below.  See if you relate or if anyone can relate.

Heat Sensitivity, Nerves jumping in face and eyes, sometimes pain and redness around the skin of eyes, kinda pinkish.... occasional trimmers coupled with loss of coordination and balance along with in and out slurred speech, a other varying waves of relapse include Extreme fatigue and a huge fog comes over me. I can't sit up or stand without getting dizzy and feel like passing out. For a few days of the relapse It's just bed rest. The other parts are off and on having to use cane. Up and down, symptoms change but eventually the waves grow dim and I go back to being normal for a while. Things seem to get exacerbated when I do to much like go more than 4 -5 hours without taking a break and resting, lifting anything to heavy...so it seems to be straining things lead me to relapse.

I used to be go go go...on the run but life has changed and I find that although I am eating gluten free and being careful not to relapse, I entered another a month ago and I am having to get IV steroid infusion tomorrow to break the cycle of this one. Just when I think I am beginning to feel better and go do something I go right back down. Its seems Gabapentin, Baclofen, and LOTS of rest only get me where I need to be again. It's frustrating. I wanted to share as well so that we can combine forces to get some answers! I have decided to go to a Allergy Clinic of sorts to try and get tested for environmental and food allergies.

I am sorry you do not have funding for care. See if there is local clinic that can at least run some preliminary blood work on you. I am not sure if you can see one now in your state being 17 but there is usually a 211 or a 311 line in most cities that will give you the list of places you can go for free or on sliding scale. See if they will run any allergy panels as well. I have found that we have to be proactive in our own care because sometimes there is no simple answer and the more we talk one another with the research sometimes we do on own, we find out more than 4 years of going to a doctor could ever tell you.

Thanks for all your input here. I look forward to being a member and helping where I can!

I will send updates as I get them.

Blessings to you all!

Aly

[Jmg]

On 8/26/2016 at 1:45 AM, Aly46 said:

Hi There! I am Aly and I have suffered seriously for about 4 years with an huge increase in symptoms. I just recently started a gluten free diet a few months ago and I am sure I make mistakes because I feel it when I do.  

Hi Aly and welcome

You may want to repost this in a new thread, that way more people will see it and can advise you. 

I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder.

That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more. 

Best of luck!

Matt

[miguel54b]

On 8/18/2016 at 9:58 PM, Fundog said:

Yes, you should save up money to get the testing done.  However, when you are ready for the tests, you need to eat gluten for three months before the tests, or they will not be accurate.   Good luck!

I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 

[kareng]

53 minutes ago, miguel54b said:

I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 

Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc

 

[miguel54b]

The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 

[notme]

too many of us are treated this way, unfortunately   ^^^^^  and many of us have been in the same (no quality of life!  always sick! )  situation and yes, it can be life threatening if left untreated.  so glad you're feeling better   no thanks to the almighty doctor 

i have a celiac diagnosis and my g.p. (who i go to - or used to go to - for my check ups, see how my blood pressure is, vitamin levels, etc.  normal maintenance, you know) tried to give me viberzi!!  for my ibs-d !!  what???  i have celiac.  i was furious!!  (i'm still pretty upset)   o, the good news was that he gave me a coupon for the first month.  after that, it's THIRTY DOLLARS A MONTH.   not to mention all the lovely side effects (one of them was diarrhea!!)   no, thanks, buddy....  

anyways, rant over lolz - welcome to the forum!

[vita1]

Hi, I decided to write a little update. So, I'm going to see a doctor soon in hopes that he can help with something, don't know how exactly he could help me but it doesn't matter. And I ate a piece of cake today and yesterday my friend persuaded me to eat a peace of bread. My eye was twitching a lot, not now though, I am very tiered, right now it's 11pm here and I feel like if it were 4am(which is the time I start feeling tiered). And another not so great thing is that my stool is pale/light grey colored(when I didn't eat gluten I don't think it was as pale) which at first I didn't pay that much attention to, I thought that it was some what normal. Oh, and I was extremely irritated today. So, those are the things that happened to me after eating piece of bread and cake and something that may contain gluten.