Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

21yr Old Female- Newly Self Diagnosed...


kiwi-girl

Recommended Posts

kiwi-girl Newbie

Hi Gluten-Free members,

Wow... honestly only today did I finally do a self diagnosis and realised that it was very likely I had an allergy to gluten (celiacs disease).

Here are my symptoms:

* Stomach Pain and bloating

* Diarrhea (been constant for months)

* Weight loss (I eat like a pig and never go above 53 kgs - I'm 5ft7)

* Irritability

* Depression

* Constantly Tired

* No energy

* Mouth Ulcers

* Mild IgA deficiency

* Anal fissures/bleeding (sounds gross I know)

* Felt like I was absorbing any nutrients

* Weakness

* Stomach gurgling and noises

So from all those symptoms would most of you conclude that I had celiacs disease? I know self diagnosis can be dangerous. I actually went to see the doctor about 6 months ago for my symptoms and she was absolutely useless! Only about 25 yrs old... she did a few tests and although I had a mild IgA deficiency she couldn't tell me what was wrong with me.

When mum suggested today that I might have celiacs (coz of my symptoms and my cousin has it too) - I went online and couldn't believe how many of the symptoms I fitted.

Now this is going to sound kind of gross - but did any of you have an embarrassing problem like an itchy anus? I developed this about a year ago and felt tiny lumps around there... and I just knew that it must be related to my stomach pains coz it all seemed to stem from my intestines.

I am a BIG bread and cereal lover and have never gone a day in my life without them - so I have never been gluten free long enough to realise that that was my problem. So from today onwards I am embarking on a gluten free diet and hopefully I'll notice a great improvement. I knew I was unwell for so long but I didn't know what was wrong with me! I am sooo happy that I might have found a cure :D sooo sooo relieved that all my problems haven't been in my mind and it hasn't just been me feeling stressed or "run down". To have possibly found an answer is amazing - I would much rather know that I have this disease than be living with all the symptoms that have been causing me a lot of unhappiness. I don't know why people seem so dissapointed to have found out they have celiacs - for me it is the biggest blessing to finally have found an answer!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



katebuggie28 Apprentice
Hi Gluten-Free members,

Wow... honestly only today did I finally do a self diagnosis and realised that it was very likely I had an allergy to gluten (celiacs disease).

Here are my symptoms:

* Stomach Pain and bloating

* Diarrhea (been constant for months)

* Weight loss (I eat like a pig and never go above 53 kgs - I'm 5ft7)

* Irritability

* Depression

* Constantly Tired

* No energy

* Mouth Ulcers

* Mild IgA deficiency

* Anal fissures/bleeding (sounds gross I know)

* Felt like I was absorbing any nutrients

* Weakness

* Stomach gurgling and noises

So from all those symptoms would most of you conclude that I had celiacs disease? I know self diagnosis can be dangerous. I actually went to see the doctor about 6 months ago for my symptoms and she was absolutely useless! Only about 25 yrs old... she did a few tests and although I had a mild IgA deficiency she couldn't tell me what was wrong with me.

When mum suggested today that I might have celiacs (coz of my symptoms and my cousin has it too) - I went online and couldn't believe how many of the symptoms I fitted.

Now this is going to sound kind of gross - but did any of you have an embarrassing problem like an itchy anus? I developed this about a year ago and felt tiny lumps around there... and I just knew that it must be related to my stomach pains coz it all seemed to stem from my intestines.

I am a BIG bread and cereal lover and have never gone a day in my life without them - so I have never been gluten free long enough to realise that that was my problem. So from today onwards I am embarking on a gluten free diet and hopefully I'll notice a great improvement. I knew I was unwell for so long but I didn't know what was wrong with me! I am sooo happy that I might have found a cure :D sooo sooo relieved that all my problems haven't been in my mind and it hasn't just been me feeling stressed or "run down". To have possibly found an answer is amazing - I would much rather know that I have this disease than be living with all the symptoms that have been causing me a lot of unhappiness. I don't know why people seem so dissapointed to have found out they have celiacs - for me it is the biggest blessing to finally have found an answer!!!

I am self dxed too. i had a lot of the symptoms that you had/have. didn't even know that I had a problem until my stomach pains became a daily issue. I have been gluten-free for 11days, and i already feel 1,000% better! the first few days were hard because I was scared to eat, but this site helped me out soooooo much! I don't know what I would've done without the people on here. If you need any help, ask. Evreyone here is so kind, and no matter how long they have been gluten-free they still always stop in and answer our questions over and over. It wonderful. Stick with it. My first week I kept messing up accidently, but I have learned so much in that time. I no longer feel like I have to starve, or that I am "different." My family doesn't get ot, but I manage. My opinion is that you do need to try a gluten-free diet. what can you lose? I had everything except for the mouth ulcers and the weight loss. ( I gained weight, but maybe from an all alcohol diet due to being afraid to eat) Good luck on your journey. It's really not that hard.

Ursa Major Collaborator

Now I don't want to burst your bubble, and you really may have celiac disease. But all your symptoms, especially the itchy anus and little bumps sound like it could be parasites, too. Maybe both, in fact.

I am most certainly intolerant to gluten, there is absolutely no doubt about that. But I just did a parasite cleanse, and must have had a million parasites come out! It was pretty disgusting, really.

Here is the cleanse that quite a few people here tried. Most people have parasites, and doctors are mostly just as useless diagnosing parasites as celiac disease. Open Original Shared Link

I guess you will know soon if the gluten-free diet will help you feel better. I really hope so, because it is a fairly easy fix. Changing your diet isn't simple, but once you get the hang of it it won't be a big deal most of the time.

AliB Enthusiast

Parasites could be a problem, however, I have been gluten-free for nearly 4 months and just last week I had a 'proper' gluten reaction, twice. The second time was from food that I thought was safe (with oats in) and have been eating all through so I obviously have been getting low-level gluten without realising the symptoms were from that (I just thought it was because my gut wasn't yet healed and I was getting problems with other foods).

The 'glutening' attack I had the first time left me with a pounding heart, gurgling stomach, restless legs, and weirdly during the night, an itchy anus! It felt like worms were coming out!!!! I have never had that before or since. I have realised that it was due to the glutening, so it is possible that your similar problem could be gluten related. we are all different and react differently. The only way to find out is to stick to the diet, make sure you eliminate all sources and see what happens.

You didn't specify how big the 'lumps' are - could they be piles? Have you ever had them or do you know what they are like? The effect is like having varicose veins around the anus. Sometimes they are like a skin tag. Again, it would be interesting to see if that clears up or at least improves with the progression of the diet.

If it does, then my bet would be on gluten rather than parasites, although doing a parasite cleanse might not be a bad idea.

Can you see another doctor? I couldn't tell if you were in the States or the UK but if you want to be tested to get a proper diagnosis (in the UK, a diagnosis means gluten-free food on prescription), then go back and ask for proper testing to be done. You certainly seem to have many 'classic' symptoms of Celiac although there again they could be due to something else. It needs to be done now before you really get going with diet and the antibodies start to recede. Tell your doctor that 1 in 3 people carry the genes and this is a far bigger problem than most people realise. Those doctors that do are getting most of their patients tested for it and recognise that the testing procedure is not definitive - there is too much margin for error.

If you manage to get tested, ask for IgA, IgG, EMA, and tTg tests. I have also asked my doctor for a gene panel to be done for extra backup. If you carry the Celiac genes, the likelihood that your symptoms are due to it obviously increases and it can hold a little more weight to a diagnosis.

Don't worry about the self-diagnosis - there are plenty of us on here who worked it out for ourselves when our doctors also proved useless! You can't get better proof than an improvement when on the diet.

The best thing you can do is to arm yourself with knowledge. My doctor openly admitted the other day that I know more about it than she does! They can't keep up with all the research, and because Celiac is viewed (erroneously) as a 'rare' disease, the new info coming out about it often gets overlooked for stuff the doctors consider to be more important.

MDRB Explorer
Hi Gluten-Free members,

Wow... honestly only today did I finally do a self diagnosis and realised that it was very likely I had an allergy to gluten (celiacs disease).

Here are my symptoms:

* Stomach Pain and bloating

* Diarrhea (been constant for months)

* Weight loss (I eat like a pig and never go above 53 kgs - I'm 5ft7)

* Irritability

* Depression

* Constantly Tired

* No energy

* Mouth Ulcers

* Mild IgA deficiency

* Anal fissures/bleeding (sounds gross I know)

* Felt like I was absorbing any nutrients

* Weakness

* Stomach gurgling and noises

So from all those symptoms would most of you conclude that I had celiacs disease? I know self diagnosis can be dangerous. I actually went to see the doctor about 6 months ago for my symptoms and she was absolutely useless! Only about 25 yrs old... she did a few tests and although I had a mild IgA deficiency she couldn't tell me what was wrong with me.

Yeah, as others have said it could be something other than celiac disease. It could be parasites, lyme disease or a whole host of other things. If the gluten free diet works then you have your answer, if it doesn't you should see a doctor.

Good Luck

ShayFL Enthusiast

I would def. look into the parasite angle. It sounds spot on.

spunky Contributor

Well, since we're being gross and it does seem safe to be gross here :rolleyes: ... I'll put in my two cents.

Of course, I'm not a doctor and don't attempt to diagnose anybody, but I also diagnosed myself with celiac disease... very similar to your sypmtoms, and I can't say really how long I had those symptoms, but that they became very bothersome, worse and worse, and eventually started scaring me and controlling every thing I did or planned in my life. I finally got myself gluten free.

Now the gross part I wanted to share with y'all :P is that the last two times I was glutened by accident my first symptom was the itchy anus... like... my first thought was worms!!! Now, in many people this could be a sign of worms... but for me, a day after the itchiness, then it felt like the inside of my a$$ just swelled up really big and inflamed, and then the diarrhea started... like it was so urgent, but my a$$ so swelled up and inflamed that it was hard to go, but hard to not go too... so it was very "problematic," we'll call it.

After having that happen two times connected with gluten... I am now terrified of the stuff!!! I stay healthy otherwise, at 2 1/2 years gluten free.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



LuvMoosic4life Collaborator
Hi Gluten-Free members,

Wow... honestly only today did I finally do a self diagnosis and realised that it was very likely I had an allergy to gluten (celiacs disease).

Here are my symptoms:

* Stomach Pain and bloating

* Diarrhea (been constant for months)

* Weight loss (I eat like a pig and never go above 53 kgs - I'm 5ft7)

* Irritability

* Depression

* Constantly Tired

* No energy

* Mouth Ulcers

* Mild IgA deficiency

* Anal fissures/bleeding (sounds gross I know)

* Felt like I was absorbing any nutrients

* Weakness

* Stomach gurgling and noises

So from all those symptoms would most of you conclude that I had celiacs disease? I know self diagnosis can be dangerous. I actually went to see the doctor about 6 months ago for my symptoms and she was absolutely useless! Only about 25 yrs old... she did a few tests and although I had a mild IgA deficiency she couldn't tell me what was wrong with me.

When mum suggested today that I might have celiacs (coz of my symptoms and my cousin has it too) - I went online and couldn't believe how many of the symptoms I fitted.

Now this is going to sound kind of gross - but did any of you have an embarrassing problem like an itchy anus? I developed this about a year ago and felt tiny lumps around there... and I just knew that it must be related to my stomach pains coz it all seemed to stem from my intestines.

I am a BIG bread and cereal lover and have never gone a day in my life without them - so I have never been gluten free long enough to realise that that was my problem. So from today onwards I am embarking on a gluten free diet and hopefully I'll notice a great improvement. I knew I was unwell for so long but I didn't know what was wrong with me! I am sooo happy that I might have found a cure :D sooo sooo relieved that all my problems haven't been in my mind and it hasn't just been me feeling stressed or "run down". To have possibly found an answer is amazing - I would much rather know that I have this disease than be living with all the symptoms that have been causing me a lot of unhappiness. I don't know why people seem so dissapointed to have found out they have celiacs - for me it is the biggest blessing to finally have found an answer!!!

I am also self diagnosed and 22. I completely agree with you that it is the biggest blessing. I mean, there are times it sucks and can get stressfull, but in the end I am so glad I found out the cause to my problem. I just wish people around me could understand how grateful I am. This forum has definitly been so helpful since doctor and family definitly arent!!

ShayFL Enthusiast

If we are going to be very specific about the symptom "anal itching" I will throw in my experience as well. I have 1 hemmoroid that I devoloped when pregnant with my daughter. It rarely bothers me, but every once in awhile it gets swollen and it "itches like mad" for a few days. I dont scratch it. I use ice packs and witch hazel which takes care of it in a few days.

mysecretcurse Contributor
Hi Gluten-Free members,

Wow... honestly only today did I finally do a self diagnosis and realised that it was very likely I had an allergy to gluten (celiacs disease).

Here are my symptoms:

* Stomach Pain and bloating

* Diarrhea (been constant for months)

* Weight loss (I eat like a pig and never go above 53 kgs - I'm 5ft7)

* Irritability

* Depression

* Constantly Tired

* No energy

* Mouth Ulcers

* Mild IgA deficiency

* Anal fissures/bleeding (sounds gross I know)

* Felt like I was absorbing any nutrients

* Weakness

* Stomach gurgling and noises

So from all those symptoms would most of you conclude that I had celiacs disease? I know self diagnosis can be dangerous. I actually went to see the doctor about 6 months ago for my symptoms and she was absolutely useless! Only about 25 yrs old... she did a few tests and although I had a mild IgA deficiency she couldn't tell me what was wrong with me.

When mum suggested today that I might have celiacs (coz of my symptoms and my cousin has it too) - I went online and couldn't believe how many of the symptoms I fitted.

Now this is going to sound kind of gross - but did any of you have an embarrassing problem like an itchy anus? I developed this about a year ago and felt tiny lumps around there... and I just knew that it must be related to my stomach pains coz it all seemed to stem from my intestines.

I am a BIG bread and cereal lover and have never gone a day in my life without them - so I have never been gluten free long enough to realise that that was my problem. So from today onwards I am embarking on a gluten free diet and hopefully I'll notice a great improvement. I knew I was unwell for so long but I didn't know what was wrong with me! I am sooo happy that I might have found a cure :D sooo sooo relieved that all my problems haven't been in my mind and it hasn't just been me feeling stressed or "run down". To have possibly found an answer is amazing - I would much rather know that I have this disease than be living with all the symptoms that have been causing me a lot of unhappiness. I don't know why people seem so dissapointed to have found out they have celiacs - for me it is the biggest blessing to finally have found an answer!!!

You need humaworm! Itching anus is a HUGE sign of parasites. So are a lot of your other symptoms in fact. I'm on humaworm right now, its good stuff.

LuvMoosic4life Collaborator
:lol: I figured I'd throw in that I have also has poop hole itching when I wasnt gluten free!!!!!! it was so annoying, especially at work :lol:
ShayFL Enthusiast

"poop hole itching"....now that made me laugh!! Laughing is good. :)

babysteps Contributor
So from today onwards I am embarking on a gluten free diet and hopefully I'll notice a great improvement.

Good luck!

My husband jokes that 'everything can't be a gluten reaction, can it' but I tell him it can. You know, I haven't had an itchy butt since going gluten-free, hm wonder about that!

Can you see another doctor? I couldn't tell if you were in the States or the UK but if you want to be tested to get a proper diagnosis (in the UK, a diagnosis means gluten-free food on prescription), then go back and ask for proper testing to be done. You certainly seem to have many 'classic' symptoms of Celiac although there again they could be due to something else. It needs to be done now before you really get going with diet and the antibodies start to recede.

The best thing you can do is to arm yourself with knowledge.

Yes , knowlege=power

Like AliB says, f you CAN get tested, try *not* to go gluten-free until afterwards

Yeah, as others have said it could be something other than celiac disease. It could be parasites, lyme disease or a whole host of other things. If the gluten free diet works then you have your answer, if it doesn't you should see a doctor.

Good Luck

sage advice :)

My doctor also gave tests to rule out IBD and Crohn's

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,684
    • Most Online (within 30 mins)
      7,748

    Denise9
    Newest Member
    Denise9
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Joe R
      Thank you for your advice. I appreciate the help. 
    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
    • Mari
      Hi StevieP I think it is best to take GliadinX Just before, during or just after you eat a food that may have a small amount of gluten.  Taking 2 capsules of GliadinX in the morning will not protect you all day because it will be long gone when you need it. The upper digestive system is where the digestive enzymes break down gluten. The problem with Celiacs is that normal digestion will only break down gluten to the point where the small fragments will still cause a reaction. GliadinX will break down the fragments so that they are too small to start the autoimmune reaction.  The label on my bottle reads'it works in the stomach' and that is ver concentrated so 1 capsule is the recomm Hope this helps/Have a lovely cruise.ended dose for each meal. 
    • StevieP.
      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
×
×
  • Create New...