Jump to content

  • 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
kiwi-girl
Posted

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
katebuggie28
Posted
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
Ursa Major
Posted

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
AliB
Posted

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
MDRB
Posted
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
ShayFL
Posted

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

spunky Contributor
spunky
Posted

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
LuvMoosic4life
Posted
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
ShayFL
Posted

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
mysecretcurse
Posted
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
LuvMoosic4life
Posted
: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
ShayFL
Posted

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

babysteps Contributor
babysteps
Posted
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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.