Desperate For Help :( No Diagnosis And At A Dead End.

[chloe1990]

Hi everyone im new to this and this is my very first post.

However i have spent the last month reading everyone elses stories and posts

Im a 20 year old female and am literally at a loss for what to do or where to go.

My story is this....

For my whole life i have been underweight, at three months old my mother was told i was not thriving, i was a very fussy whiney baby, i refused bottles and would scream in pain, as a result my mum put me on solids from an early age. As i got older i had a brilliant appetite but was still very very skinny, so much so that people would stop and ask my mum if she was feeding me.

I had stomach problems on and off throughout my teens, with bouts of diarrehea that would be accompanied with sweating and the shakes.

The diarrehea would dissapear for long periods of time but would flare up again.

At ten years old i come down with what can only be described as a flu like illness. I was bedbound for a month, i would wake for an hour a day, other than that i slept solidly, would not eat, passed out, just generally was a mess, my mum took me to a&e on a few occasions that month they suggested it could be glandular fever but told my mum to just take me home keep me warm and that id be fine. I came down with this exact thing again at 13 and 16 years of age, my mum is adamant it was not typical flu however we never got a diagnosis. Also i should add here it was around this time that my dentist noticed a lack of enamel on my teeth, and that my front teeth were pitted.

At 14 i started my periods, which were awful, so heavy that id pass out and they were always (and still are) accompanied by diarrehea.

My menstural cycle is now the only time i actaully get diarrehea now, the rest of the time i just get a very gurgley tummy which makes strange noises and often feels painful.

I hate to be so incredibly graphic but my only toliet troubles now is the fact that when i go my stools will not flush, ever, its very embarrassing.

Whilst on the subject of puberty i should also add that i have never ever developed any breast tissue (and ill be 21 this week)

Over the past couple of years ive started to become very lazy and have no get up and go what so ever, i cant find any motivation, nothing excites me.

I have awful mood swings and get depressed.

My weight is also a problem im still incredibly skinny and cannot gain a single pound no matter how hard i try, ive been on weight gain shakes, super high calories diets, nothing works, my doctor says it simply a fast metabolism but my instinct says otherwise. Im five foot ten and only 114 pounds. Im constantly ridiculed by people and asked if i have an eating disorder, which i certainly dont. I eat a lot although i do get full up very quickly so have to eat in small sittings.

Also other symptoms over the last few years are strange dotted rashes that are almost under my skin, again my doctor cannot diagnose these, first he said it was a fungal rash now he says he is unsure.

Ive also visited the doctor on many occasions complaining of shortness of breath, like i cant catch a full breath or inhale properly.

Ive also been in tears due to extreme hair loss which is still continuing.

So just to summarise these are my CURRENT symptoms...

Very underweight, cannot gain.

Very little muscle tone.

Easily fatigued

need lots of sleep

gurgley noisy tummy

stools that wont flush

extreme hair loss

unexplained dotted rashes

heavy periods

poor tooth enamel

shortness of breath (without exercising)

headaches

VERY dry skin on face and body

cold hands and feet at all times

Difficulty falling off to sleep (takes at least an hour of tossing and turning)

Dentals problems, lots of cavities and pitted front teeth.

Get full quickly, but need to eat lots

occasional joint pain

dark under eye circles (darker than average)

I just feel so lost, my doctor puts everything down to stress or says it psychological.

He has done blood work but refuses to test for celiac as he says my symptoms dont match up.

He explains he way out of everything and makes me feel like a hypochondriac.

Im so fed up of being skinny i cant get clothes to fit ever and people forever accuse me of having an eating disorder.

My once thick hair is falling out in handfuls.

My body is covered in strange rashes and is forever flakey and dry

I just want to feel normal, im beyond depressed and my confidence is at an all time low

Any help or advice would be so appreciated

[mushroom]

Hello, and welcome to the forum, Chloe.

You poor dear, you have been suffering for such a long time (and from my point of view, so needlessly).

Is it possible for you to get a new doctor?? (You talk about a&e so I am assuming you live in a British country with possibly a national health system of some kind). Your present doctor would not recognize the symptoms of celiac if he tripped over them. Everything you have told me indicates to me that you either have celiac disease or are gluten intolerant. You are probably hypothyroid to boot. No, I am not a medical professional, this is doctor mushroom talking, but it doesn't take a medical professional to recognize the symptoms you are describing. They are all symptoms that people post about on this board day after day, as you have probably noticed, and many of them I have had myself (undiagnosed, I might add). In fact, I cannot find one symptom on your list that is NOT associated with celiac disease. You need to get blood tested immediately before you suffer any longer. We just have to work out how you are going to do that.

Post again and let us know what your doctor options are where you live.

And hang in there - hopefully this will soon be over. {{{hugs}}}

[chloe1990]

Hello, and welcome to the forum, Chloe.

You poor dear, you have been suffering for such a long time (and from my point of view, so needlessly).

Is it possible for you to get a new doctor?? (You talk about a&e so I am assuming you live in a British country with possibly a national health system of some kind). Your present doctor would not recognize the symptoms of celiac if he tripped over them. Everything you have told me indicates to me that you either have celiac disease or are gluten intolerant. You are probably hypothyroid to boot. No, I am not a medical professional, this is doctor mushroom talking, but it doesn't take a medical professional to recognize the symptoms you are describing. They are all symptoms that people post about on this board day after day, as you have probably noticed, and many of them I have had myself (undiagnosed, I might add). In fact, I cannot find one symptom on your list that is NOT associated with celiac disease. You need to get blood tested immediately before you suffer any longer. We just have to work out how you are going to do that.

Post again and let us know what your doctor options are where you live.

And hang in there - hopefully this will soon be over. {{{hugs}}}

[chloe1990]

Hi, thank you so much for your reply.

Yes i live in London and so i am covered by the nhs.

Ive been with my doctor for my whole life, where i live there are only a limited number of doctors, all of which are over flowing with paitients, its almost impossible to register somewhere new.

I think to my doctor he is not overly concerned since is till manage to function on a day to day basis, i work i go to university i get good grades etc.

However deep down im so unhappy, and its making me so miserable.

The main issues are my inability to gain weight and the hair loss.

However when i list all the things i mentioned here (some of which i forgot like brown patches on my skin, aching jaw) the doctor says im trying to "find" thingswrong with myself. But im really not like that, i hate fuss i hate complaining.

The main reason he wont test is because he says im not overweight (clearly!!) and i dont have the common fatty stools.

When he checked my bloods he checked the normal stuff, blood count etc as he suspected anemia but that was not the case.

I just feel so unhappy, all my friends are going away for summer and i cant go since i cant even find a swimsuit or any shorts to fit!

[moodle]

Hello, and welcome to the forum, Chloe.

You poor dear, you have been suffering for such a long time (and from my point of view, so needlessly).

Is it possible for you to get a new doctor?? (You talk about a&e so I am assuming you live in a British country with possibly a national health system of some kind). Your present doctor would not recognize the symptoms of celiac if he tripped over them. Everything you have told me indicates to me that you either have celiac disease or are gluten intolerant. You are probably hypothyroid to boot. No, I am not a medical professional, this is doctor mushroom talking, but it doesn't take a medical professional to recognize the symptoms you are describing. They are all symptoms that people post about on this board day after day, as you have probably noticed, and many of them I have had myself (undiagnosed, I might add). In fact, I cannot find one symptom on your list that is NOT associated with celiac disease. You need to get blood tested immediately before you suffer any longer. We just have to work out how you are going to do that.

Post again and let us know what your doctor options are where you live.

And hang in there - hopefully this will soon be over. {{{hugs}}}

Hi Chloe,

Have you tried a gluten free diet (off your own bat) to see if your symptoms ease? If not, I would try it. You sound as though you have been to hell and back

I have coeliac disease and was also very sickly as a baby and extremely skinny growing up - it didn't matter how much I ate or what I ate I struggled to put any weight on. This only changed after I had experienced pregnancy (I'm not recommending that by the way as a solution)

I would also keep a food diary and note what you have eaten and also how you feel, symptoms etc. Doctors take much more notice when you approach them armed with evidence and self knowledge.

Big hugs sent. I really hope you find a solution soon.

Moodle

[mushroom]

Now if you can find it in yourself to laugh, that is hilarious. Most doctors will not test you if you are not skinny and underweight, failure to thrive in children being what they were taught in medical school Whereas you can actually be skinny, normal weight or overweight and still be celiac. And while many celiacs who are underweight are skinny because of malabsorption, it is not necessary to be nutrient deficient to be celiac. And just because you are not extremely ill does not mean you are not celiac or gluten intolerant. Does he want you to be at death's door before you are diagnosed, ferevvins sake? I will search around for a list of symptoms for you, or maybe someone else will post, that you can take to show him.

[chloe1990]

Thank you so much again for all of these lovely responses, its so nice to finally have people who listen.

Obviously my mum and boyfriend do but they have no experience or celiac and are also in the dark.

Ive not tried a gluten free diet by myself for two reasons...

1. im worried my doctor would finally agree to test me and id get a negative result.

2. im terrified ill go gluten free and nothing will change, although its very odd i almost want to be celiac just because it would be an answer/diagnosis something i could work with and understand, i really dont want to be disappointed and back at square one. (i did this when my doctor suggested i was anaemic he convinced i was, and that when the bloods came back id be "cured" i was disappointed when they were negative)

But i think soon im going to have to try, the way things are i have nothing to lose.

I went swimming with my younger sister and a lady asked me to cover up with a towel since my body was making her feel sick lol i do laugh but it is depressing.

Im thinking of paying for someone to carry out private allergy testing, or even a dietitian who may help me.

[IrishHeart]

Hi, thank you so much for your reply.

Yes i live in London and so i am covered by the nhs.

Ive been with my doctor for my whole life, where i live there are only a limited number of doctors, all of which are over flowing with paitients, its almost impossible to register somewhere new.

I think to my doctor he is not overly concerned since is till manage to function on a day to day basis, i work i go to university i get good grades etc.

However deep down im so unhappy, and its making me so miserable.

The main issues are my inability to gain weight and the hair loss.

However when i list all the things i mentioned here (some of which i forgot like brown patches on my skin, aching jaw) the doctor says im trying to "find" thingswrong with myself. But im really not like that, i hate fuss i hate complaining.

The main reason he wont test is because he says im not overweight (clearly!!) and i dont have the common fatty stools.

When he checked my bloods he checked the normal stuff, blood count etc as he suspected anemia but that was not the case.

I just feel so unhappy, all my friends are going away for summer and i cant go since i cant even find a swimsuit or any shorts to fit!

Your symptoms are textbook celiac. Possibly a thyroid issue as well. Clearly, you are ILL. No one loses hair for no reason. That was a major complaint for me along with MAJOR weight loss. And for the record, I HAVE JAW pain and brown patches on my skin--sometimes an adrenal gland issue)

Really, what's the big deal to him about testing you--it's blood work, for heaven's sake! (this makes me angry )

Have you ever stopped eating gluten to see if you improve? Although medical professionals do not recommend you do this without testing, many of us just go ahead anyway because we test neg and know damn well it's the gluten and we are tired of being sick. I am just wondering if you have ever seen an improvement without it?

Wish I could help more. I feel your pain and frustration in your words. Keep us posted.

[IrishHeart]

CHLOE,

Honey, print this off, circle all your symptoms and take it to the doctor. This guy clearly needs to know what's involved in CELIAC DISEASE.

Hugs to you,

GINNY

Symptoms Related to Celiac Disease or Gluten Sensitivity

This is a common question people ask in the face of a bewildering array

of possible celiac disease and gluten sensitivity symptoms.

[mushroom]

Here is an article with a by-no-means comprehensive list of celiac symptoms:

https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Celiac.com 02/08/2007 - There are no signs or symptoms typical for all people with celiac disease. Signs and symptoms and can vary greatly from person to person.

People with celiac disease often have general gastric complaints, such as intermittent diarrhea, abdominal pain and bloating. Some people with celiac disease, however, suffer no gastrointestinal discomfort at all.

To make matters of diagnosing celiac disease even more challenging, celiac symptoms can also mimic symptoms of other conditions, such as Anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions.

It is not uncommon for celiac disease to present itself with symptoms that are far more vague. Such symptoms can include: dental and bone disorders (such as osteoporosis), depression, irritability, joint pain, mouth sores, muscle cramps, skin rash, stomach discomfort, and even tingling in the legs and feet (neuropathy).

Celiac disease results in malabsorption of nutrients.

Depending on the degree of malabsorption, the signs and symptoms of celiac disease vary among individuals, ranging from no symptoms, few or mild signs and symptoms, to many or severe signs and symptoms. There are two categories of signs and symptoms:

Signs and Symptoms of Malabsorption, Malnutrition, vitamin and/or mineral Deficiencies Associated with Celiac Disease:

* Abdominal cramps, gas and bloating

* Anemia

* Borborygmi (stomach rumbling)

* Coetaneous bleeding

* Diarrhea

* Easy bruising

* Epitasis (nose bleeding)

* Failure to thrive

* Fatigue or general weakness

* Flatulence

* Fluid retention

* Foul-smelling or grayish stools that are often fatty or oily

* Gastrointestinal symptoms

* Gastrointestinal hemorrhage

* Hematuria (red urine)

* Hypocalcaemia/ hypomagnesaemia

* Infertility

* Iron deficiency anemia

* lymphocytic gastritis

* Muscle weakness

* Muscle wasting

* Nausea

* No obvious physical symptoms (just fatigue, overall not feeling well)

* Osteoporosis

* Pallor (unhealthy pale appearance)

* Panic Attacks

* Peripheral neuropathy (nerve damage)

* Stunted growth in children

* Vertigo

* Vitamin B12 deficiency

* Vitamin D deficiency

* Vitamin K deficiency

* Vomiting

* Voracious appetite

* Weight loss

* Obesity

And all that is before we get to the symptoms often reported here of hair loss, migraine, dry skin, inability to eat full meal (this is usually because gas and bloating is occupying the space in the stomach you are trying to put food into ), joint pain, dark circles under the eyes. menstrual irregularity, eczema or dermatitis herpetiformis rashes (or psoriasis), insomnia, and on and on.

If you take this list and discuss with him all the symptoms you have and he still won't test you, well, is there anyone else in England who can order a blood test??? Allergy testing is not going to get you the diagnosis you want, I'm afraid. I know naturopaths here (NZ) cannot order blood work so probably not in England either. Is there a private option outside the NHS?

Otherwise, you may be doomed to join the rest of us selfl-diagnosed folks who are self-diagnosed because we could n't find anyone to test us.

[chloe1990]

oh thank you so much!

I just got really emotional when my mum came to see me, i showed her this website and some of the stories and symptoms people have and she agrees that celiac is a real possibility for me, she knows im not a hypochondriac and suggested next week that she will come along with me to the doctors, along with my boyfriend and we will just bombard him, they say strength is in numbers so we will see how that goes.

I surprised by how many more of the symptoms on that list i have.

Im not going to be made to feel like a whining nuisance any more.

You guys have made me determined to get this sorted one way or another.

Also i dont know if this is relevant but my sister although she is not celiac (well at least not diagnosed) she does have acid reflux and many many allergies, i dont know if that makes me more likely to test positive.

[IrishHeart]

LOL well, I see that mushroom and I have the same minds...arming you with information!! Hope it helps!!

[IrishHeart]

It often runs in families, so maybe!! and I was going to suggest having MUM go with you---maybe you need an enforcer of sorts! Best luck!!

[mushroom]

Not irrelevant at all. Celiac is a hereditary disease and you have received a gene(s) from one or both parents, and your sister could have received the same gene. Just because you have the gene, however, does not mean you will develop the disease - there normally has to be a triggering event, either physical or emotional stress. illness, something to set it in motion.

[ravenwoodglass]

Gosh you are going through so much and it makes me so angry when doctors try to tell us that 'we want to be sick'. You have gotten some great advice from others but please if the doctor will not listen try the diet on your own. One thing, you mentioned a rash. If it itches and burns and leaves purplish scars that are very slow to fade it may be DH. If that is the case can you get an appointment with a dermatologist? A derm can biopsy the clear skin NEXT TO the rash and if the antibodies are found that is a diagnosis of celiac. This link might be helpful to take to the dermatologist.

Open Original Shared Link

By the way your present doctor is an idiot. If you are able to get a diagnosis do report him to whatever agency you have there that oversees doctors.

[adab8ca]

I think many of us could just PUNCH your Dr!!!! I do not advocate violence, BUT COME ON. Why why why do they think that we are making this crap (no pun intended) up?!?!?!? I have no more great advice, others have you covered for the short term but sheesh.

My Dr. also thought I was "crazy" although after a few months I am so thankful and so lucky that she took me seriously that something was terribly wrong (I am 42 and totally atypical).

Good luck, keep us posted and consider yourself hugged!!!

ada

[Marlie]

I would definitely try going Gluten Free if you can't get anywhere with your doctor. Maybe you could convince your doctor to check your vitamin levels. I would definitely start taking multivitamins if you are not already. I can tell you my daughter who is a teen lost a bunch of her hair, had brown marks on her chest which now seem to be fading, acne that is improving, her face was bright red all the time and now it is not, she suffered for a few years from terrible headaches that lasted for months, she was so tired and now has energy, she not long ago had breathing difficulties (she is on an inhaler now and doing better), tummy and knee pain that are now gone, dizziness, nausea that are now gone. She has deformed teeth, nails that never seem to grow, and many broken bones. Its a long laundry list of items that all make sense now. Symptoms would go on for weeks, months or years then disappear and a new medical issue would appear. The wonderful thing about Celiac/Gluten Intolerance is if you can't get a doctor to listen you don't need a prescription for medicine. You are in the driver's seat and can experiment on your own with this diet and see if you feel better.