Undiagnosed

[hellopixies90]

Hi everyone,

I have suspected a gluten allergy for quite some time now, but I have not been to a doctor yet for a diagnosis, and I am not sure whether I could still get diagnosed through blood tests since I have already given up gluten. I will list all of my symptoms and then specify which ones I am not experiencing anymore, though it's only been about two days that I have avoided all gluten.

My symptoms:

Extreme constipation: Kind of gross, but I have had constipation forever and this is not an exaggeration. My mother tells me that as young as two or three, I would scream and run around the house when I had to "go" because it hurt me so much and I was actually scared of the poop. When I got older, maybe eight or nine, I would often go to the hospital for enemas and it was common to go without a bowel movement for a whole week. By the time I was thirteen, I had very bad haemorrhoids and would often use creams, though surgery had been recommended (I have not gotten this yet).

Abdominal Pain/Painful Bloating: The fact that I am constantly bloated is almost a joke in my family (my nickname is "balloon"). Right after eating, though I could never figure out what was doing this exactly, I would experience really bad abdominal cramps that made standing and walking very difficult. I have often had to abandon malls or had to take the subway when I didn't plan to because of these pains. They always seemed to happen right after eating though not ALWAYS. Sometimes, I seemed to get them even on an empty stomach.

Fatigue/Dark under eye circles - Eating exhausts me. I have often considered fasting during the day and eating at night just to avoid my debilitating exhaustion. It's not just a regular tiredness after eating... it's like, I HAVE to sleep. I also sleep a LOT despite the high demands on my time. I probably average about 10-12 hours a day and could do more if I could. I am always tired and have really really dark under eye circles and bags. Despite copious amounts of expensive make up, I always look exhausted (which I usually am).

Vitamin Deficiencies: I have not always had these, just in the past few years. I now get iron and vitaminb12 shots every month despite the fact that my diet seems to contain enough of both these nutrients.

Numbness: My feet and hands go numb really really easily (just sitting down can make them numb) and it sometimes takes a while before I can get feeling back in them.

BAD SKIN/premature ageing: I suffer from poor wound healing and lots of stretch marks/scars. My skin just seems to be ageing even though I am only 20 and have not gone through significant weight gain or loss in a short period of time.

Sores: I have recurring sores on my scalp and no remedies have worked thus far.

Hormone Imbalance: I have too much testosterone/not enough estrogen (I am a girl!).

That is everything.

It's only been two days that I have gone gluten free... so far I do not experience bloating, abdominal pain or exhaustion after eating. I still feel really tired though (I just don't CRASH/feel drunk like before) and still have all the other symptoms. The thing is ... not feeling pain after I eat is such a HUGE deal for me that I don't want to start eating pasta again.

But I heard that you must be eating gluten at the time of blood tests for accurate results.

Also, I tried gluten free for about three days once and then gave it up because I didn't know for sure it's what I had (and because I LOVE bread) and I felt much sicker on the first day or eating it again than I usually would.

I think I might have a gluten sensitivity or allergy but I am not sure whether that's it. I am really depressed and worried my symptoms won't go away... today I felt so exhilarated after eating lunch because it did not make me tired. But then a few hours later, while I was on the train, I was HIT by a wave of exhaustion. It made me cry.

How long does it take before ALL symptoms related to gluten intolerance clear up? Is it too early for me to throw in the towel?

I feel kind of hopeless... and wonder whether this is what I have at all because I have been to MANY doctors describing exactly these symptoms and none of the myriads of blood tests, MRIs, medicines and suggestions had ANYTHING to do with celiac disease. And it seems strange that no doctor would suggest it....

Also, I am not sure whether this has anything to do with anything, but I was born with an underdeveloped digestive tract... it causes lots of acid reflux and pain in children but goes away after a few months.

[ravenwoodglass]

Since you have only been gluten free for 2 days call your doctor this morning and ask if you can pick up a lab slip for a celiac panel todayif you feel you need a doctors diagnosis. You may still have enough antibodies for them to be picked up. However there are many here who are self diagnosed for a variety of reasons. Blood tests and biopsy can have false negatives so if you feel you can stick with the diet without a formal diagnosis just stay off gluten and heal. It can take some time for all symptoms to resolve and different people heal at different rates. You should also drop dairy for a bit until you are well healed.

[Monklady123]

Well... my blood work was "inconclusive". ha! By the time I got those results I had already gone gluten free because my doctor said that's what it sounded like. She told me that if I wanted conclusive proof I would have to have an endoscopy which would mean continuing on gluten. I was so miserable that I said I was just going to try the diet. Omg... 100% improvement. She said that was proof enough for her and it was up to me whether I wanted the "gold standard" of diagnoses. I do not. No way am I going back on gluten for several MONTHS.

[T.H.]

Short answer to the most important question first: is it too early to throw in the towel?

Oh my yes, yes it is. All symptoms going away take weeks, sometimes a few months, to resolve for most of us. Some even longer. We often find out we have other food intolerances/allergies/conditions, to boot, but gluten is probably a good start for now, considering that you had a definite change when you changed diets.

And now, the most important question for you: why do you need a diagnosis?

Does it help you to stick to a gluten-free diet if you have a formal diagnosis? Do you need it to deal with relatives in your home who won't believe it otherwise? Do you need it for legal reasons, like a note for dorm meals somewhere, etc...? If you went gluten free and saw marked improvement, would your doctors write you at least a diagnosis of 'gluten intolerance?'

I ask this because, if you ARE gluten intolerant, one of two things happens:

- They test you, with a blood panel and possibly an endoscopy with a biopsy. Which will cost a fair amount (for the latter especially) and you will likely have to wait at least a month on the gluten before getting the endo. And if it's positive, the remedy is: don't eat gluten.

Or you decide that you don't need a diagnosis and the remedy you try is: don't eat gluten.

So the conclusion ends up being the same, just a huge cost difference. But if you need the diagnosis for a particular reason, yeah, you need to get tested right now, and if you really want a biopsy diagnosis, get back on gluten ASAP, because usually, if you go off of it and then try to go back on, the symptoms are worse. The longer you stay away, the worse the symptoms get, it seems. So your feeling worse after you avoided it for a few days and started eating gluten again? That's pretty typical of a celiac's experience.

I'd also like to share a story of a new acquaintance of mine. She was having horrible trouble, and her husband works with mine and had heard of my recent celiac diagnosis, with similar symtpoms. We traded notes, she got my doctor's information, and was tested. It came back negative, and the doctor couldn't figure out what she had.

Then we had a long talk, about false negative tests, and gluten intolerance that isn't celiac disease, and so she decided to try the diet anyway. And that did the trick. It was gluten, negative tests or not. She's SO much better now.

So even if you do get tested, even if it's negative, I'd recommend going gluten free just to try it.

As to when you'll feel better? If it's gluten intolerance or celiac disease, it's going to be a little bit. With most people I hear about, gut symptoms will often start to improve within days, but other symptoms take a bit longer.

You gotta remember, your body has been damaged continually for years. It is going to try and heal, but until it does, you won't be absorbing nutrients properly, so you'll still have any issue related to the vitamin deficiencies until you've healed, which for an adult can take months. Some can take up to two years, although that's rare. And you will likely be tired, possibly even more tired than usual, while your body uses up a lot of energy to DO the healing.

Also, the numbness may take longer than the rest, depending on what it's due to. Some celiacs have neurological symptoms, which take much longer to resolve on a gluten-free diet. But some of us have poor circulation which can improve more quickly, so that'll be a toss up.

All the symptoms you've mentioned could definitely be celiac disease. And sadly, most doctors have no clue, and never even think about this. It's more common than doctors actually figuring it out. :-( The average time for a celiac to be diagnosed is about 10 years. I wasn't diagnosed for 21 years. And based on random studies to see how many people ARE celiacs, researchers are finding that probably 97% of celiacs are undiagnosed.

Until fairly recently, medical schools in the USA taught that this disease was so rare, doctors would almost never see it. And on top of that, they taught that it always involved diarrhea, not constipation (not true), that you had to be extremely skinny (not true), and that it was always only in childhood (really not true).

This misinformation is slowly being corrected, but ignorance is still more prevalent among doctors than not.

Oh, your rash on the head? It is also possible that could be from a wheat containing shampoo. Officially, there is not evidence that gluten touching your skin will impact you unless you are allergic to wheat - which would likely show up with other products as well, like your lipstick or hand lotions. But some celiacs I know DO develop rashes where they come into contact with wheat. Maybe they are allergic as well, but some of their rashes are more like celiac rashes (DH), so I am wondering if someday they will discover a reaction from skin contact to wheat with these folks.

My daughter, a fellow celiac, has a lot of skin issues on her scalp as well, and while we don't know what they all are, they definitely seem worse unless we stick to wheat free shampoos.

Also, with avoiding wheat, how much attention are you paying to cross-contamination? That is a good way to get zapped, if you only avoid the obvious sources. If your food was contaminated, that can get you, and might be responsible for that wave of extreme exhaustion. This would definitely be a moment to trust yourself - most of us slowly learn what symptoms go along with 'getting glutened.' They don't have to be accepted symptoms, as I think many symptoms haven't been studied yet within the medical community, but a huge, overwhelming wave of exhaustion it a common reaction to getting gluten contamination of our food.

If your home has a lot of gluten so your pans, your cutting boards, your counters have gluten contamination, that'll get you.

Basically, anything that goes into your mouth needs to be clean and gluten free. That includes your fingers - if you have touched anything, don't put your fingers in your mouth before you've washed them. If you have lotion and you chew on your nails, make sure it's gluten free. Check out your shampoo (if it rinses down over your face and gets on your lips), your chapstick, your toothpaste.

Even a significant other's kiss can be an issue.

If you are a celiac, it has likely damaged the tips of your villi, which means there's also a good chance you are slightly to severely lactos intolerant until that heals. The villi tips are where lactase to digest the lactose is made.

I am not sure if the underdeveloped digestive track affected this, or might make it more likely to have food trouble. It's a possibility, I would think, or perhaps might have made you more vulnerable to potential foods that can cause a reaction, you know?

good luck. Don't throw in the towel just yet! :-)

shauna

[hellopixies90]

Since you have only been gluten free for 2 days call your doctor this morning and ask if you can pick up a lab slip for a celiac panel todayif you feel you need a doctors diagnosis. You may still have enough antibodies for them to be picked up. However there are many here who are self diagnosed for a variety of reasons. Blood tests and biopsy can have false negatives so if you feel you can stick with the diet without a formal diagnosis just stay off gluten and heal. It can take some time for all symptoms to resolve and different people heal at different rates. You should also drop dairy for a bit until you are well healed.

Hi Ravenwoodglass! I see. No I do not need a diagnosis to stay off of it anymore. I had tried in the past and failed, but I seem to be doing well this time because I have decided to reintroduce fish/meat in my diet and that is really helping. Thank you so much for reading and replying to my post! I really appreciate it.

[hellopixies90]

Well... my blood work was "inconclusive". ha! By the time I got those results I had already gone gluten free because my doctor said that's what it sounded like. She told me that if I wanted conclusive proof I would have to have an endoscopy which would mean continuing on gluten. I was so miserable that I said I was just going to try the diet. Omg... 100% improvement. She said that was proof enough for her and it was up to me whether I wanted the "gold standard" of diagnoses. I do not. No way am I going back on gluten for several MONTHS.

I agree. I do not need it either. I guess I just wanted to make sure that this was it! I hate the idea of trying this, getting my hopes up and then realizing that it's something else... but so far, most of my symptoms (and my reaction to yogurt today, seem to match a sick celiac's profile quite well. And I definitely do not want to eat wheat again

[hellopixies90]

Short answer to the most important question first: is it too early to throw in the towel?

Oh my yes, yes it is. All symptoms going away take weeks, sometimes a few months, to resolve for most of us. Some even longer. We often find out we have other food intolerances/allergies/conditions, to boot, but gluten is probably a good start for now, considering that you had a definite change when you changed diets.

And now, the most important question for you: why do you need a diagnosis?

Does it help you to stick to a gluten-free diet if you have a formal diagnosis? Do you need it to deal with relatives in your home who won't believe it otherwise? Do you need it for legal reasons, like a note for dorm meals somewhere, etc...? If you went gluten free and saw marked improvement, would your doctors write you at least a diagnosis of 'gluten intolerance?'

I ask this because, if you ARE gluten intolerant, one of two things happens:

- They test you, with a blood panel and possibly an endoscopy with a biopsy. Which will cost a fair amount (for the latter especially) and you will likely have to wait at least a month on the gluten before getting the endo. And if it's positive, the remedy is: don't eat gluten.

Or you decide that you don't need a diagnosis and the remedy you try is: don't eat gluten.

So the conclusion ends up being the same, just a huge cost difference. But if you need the diagnosis for a particular reason, yeah, you need to get tested right now, and if you really want a biopsy diagnosis, get back on gluten ASAP, because usually, if you go off of it and then try to go back on, the symptoms are worse. The longer you stay away, the worse the symptoms get, it seems. So your feeling worse after you avoided it for a few days and started eating gluten again? That's pretty typical of a celiac's experience.

I'd also like to share a story of a new acquaintance of mine. She was having horrible trouble, and her husband works with mine and had heard of my recent celiac diagnosis, with similar symtpoms. We traded notes, she got my doctor's information, and was tested. It came back negative, and the doctor couldn't figure out what she had.

Then we had a long talk, about false negative tests, and gluten intolerance that isn't celiac disease, and so she decided to try the diet anyway. And that did the trick. It was gluten, negative tests or not. She's SO much better now.

So even if you do get tested, even if it's negative, I'd recommend going gluten free just to try it.

As to when you'll feel better? If it's gluten intolerance or celiac disease, it's going to be a little bit. With most people I hear about, gut symptoms will often start to improve within days, but other symptoms take a bit longer.

You gotta remember, your body has been damaged continually for years. It is going to try and heal, but until it does, you won't be absorbing nutrients properly, so you'll still have any issue related to the vitamin deficiencies until you've healed, which for an adult can take months. Some can take up to two years, although that's rare. And you will likely be tired, possibly even more tired than usual, while your body uses up a lot of energy to DO the healing.

Also, the numbness may take longer than the rest, depending on what it's due to. Some celiacs have neurological symptoms, which take much longer to resolve on a gluten-free diet. But some of us have poor circulation which can improve more quickly, so that'll be a toss up.

All the symptoms you've mentioned could definitely be celiac disease. And sadly, most doctors have no clue, and never even think about this. It's more common than doctors actually figuring it out. :-( The average time for a celiac to be diagnosed is about 10 years. I wasn't diagnosed for 21 years. And based on random studies to see how many people ARE celiacs, researchers are finding that probably 97% of celiacs are undiagnosed.

Until fairly recently, medical schools in the USA taught that this disease was so rare, doctors would almost never see it. And on top of that, they taught that it always involved diarrhea, not constipation (not true), that you had to be extremely skinny (not true), and that it was always only in childhood (really not true).

This misinformation is slowly being corrected, but ignorance is still more prevalent among doctors than not.

Oh, your rash on the head? It is also possible that could be from a wheat containing shampoo. Officially, there is not evidence that gluten touching your skin will impact you unless you are allergic to wheat - which would likely show up with other products as well, like your lipstick or hand lotions. But some celiacs I know DO develop rashes where they come into contact with wheat. Maybe they are allergic as well, but some of their rashes are more like celiac rashes (DH), so I am wondering if someday they will discover a reaction from skin contact to wheat with these folks.

My daughter, a fellow celiac, has a lot of skin issues on her scalp as well, and while we don't know what they all are, they definitely seem worse unless we stick to wheat free shampoos.

Also, with avoiding wheat, how much attention are you paying to cross-contamination? That is a good way to get zapped, if you only avoid the obvious sources. If your food was contaminated, that can get you, and might be responsible for that wave of extreme exhaustion. This would definitely be a moment to trust yourself - most of us slowly learn what symptoms go along with 'getting glutened.' They don't have to be accepted symptoms, as I think many symptoms haven't been studied yet within the medical community, but a huge, overwhelming wave of exhaustion it a common reaction to getting gluten contamination of our food.

If your home has a lot of gluten so your pans, your cutting boards, your counters have gluten contamination, that'll get you.

Basically, anything that goes into your mouth needs to be clean and gluten free. That includes your fingers - if you have touched anything, don't put your fingers in your mouth before you've washed them. If you have lotion and you chew on your nails, make sure it's gluten free. Check out your shampoo (if it rinses down over your face and gets on your lips), your chapstick, your toothpaste.

Even a significant other's kiss can be an issue.

If you are a celiac, it has likely damaged the tips of your villi, which means there's also a good chance you are slightly to severely lactos intolerant until that heals. The villi tips are where lactase to digest the lactose is made.

I am not sure if the underdeveloped digestive track affected this, or might make it more likely to have food trouble. It's a possibility, I would think, or perhaps might have made you more vulnerable to potential foods that can cause a reaction, you know?

good luck. Don't throw in the towel just yet! :-)

shauna

Shauna,

I just came home and saw this and I am amazed at how predictable my body seems to be now (I always thought of my reactions as absolutely unpredictable). I had a gluten free lunch today, which was amazing because I ate out but the waitress said one of the bartenders who worked there was also on a no gluten diet; so, she could tell me all of the safe options. In the end, I chose to have a steak salad.

I was amazed at how comfortable I felt after the lunch. No symptoms whatsoever but I was completely satisfied!

A bit later we went for some yogurt with fruit. It took about half and hour or maybe an hour before gut symptoms kicked in and my usually flat stomach looked preggo. I was disappointed because I couldn't figure out why this gluten free snack I had just had was giving me these symptoms, but I guess this is common for celiacs. I never noticed a problem with dairy specifically before because everything seemed to make me sick... this time the symptoms really stuck out.

I don't really NEED the diagnosis for any of those reasons I guess. I just don't want to be disappointed... I want to figure out what I have definitively and then live my life according to whatever rules I have to follow. I live in Canada so the biopsy would be free, but I would have to wait a few months to see a specialist/surgeon and then wait for the results to come back etc. etc. It would take forever not to mention the procedure itself (if it is what I am imagining) sounds like something I would rather avoid!

The past few days, every day that I wake up I kind of expect my symptoms to come back. I feel like this is just too good to be true! I mean sure excluding gluten is a big dietary change... but it s a VERY small price to pay for no constant abdominal cramps and regularly crashing etc. I can't believe life can be THIS easy... and apparently it's going to get better? who knew.

I remember being yelled at by a friend once when I fell asleep at her house after a lunch of pizza; I got a really really bad headache and I was so exhausted that I passed out on her couch and didn't wake up for two hours. I felt so guilty about things like this because they seemed to happen quite regularly... it was really embarrassing, and there seemed to be no reason for my "behaviour." The idea that I might not have to deal with stuff like this again overjoys me.

[NoodleUnit]

I'm still waiting for results of my bloodtest ( things happen slowly in the UK, I find )but both myself and my neuro did it as a "why not?" exercise, as I hadn't touched gluten for weeks before I saw her. I know coming off gluten ended a very scary period in my life, as does my neuro. She's 99% certain it is celiac disease and I'm happy to take 1% uncertainty against ever going back the way I was.

It does lead to discovering other things about your body though. Dairy problems are common temporarily and I know I'm finding myself in a pickle with some ingredients commonly found in gluten-free foods, like potato flour and soy. But it's all worth it imo. realising that it's unusual to feel that bad was a revelation. I just thought everyone felt as bad as me and simply got on with life.

The transformation after going gluten-free is plenty enough evidence of celiac disease imho. You will probably find, as you research more that it explains a lot of problems going quite a way back. e.g. - my mother remembers giving me powdered milk as a 3 month old. I came up in a massive rash and no-one could say why. Chances are that powder was bulked up with wheat. The signs were there, but no one was looking for them.