7 replies to this topic

[alliznelle]

hello all! i have NOT been diagnosed with celiac's disease, or with a gluten sensitivity - but after my own research and dealing with some symptoms for over a year - i am starting to think i am finding my own answer. i don't have health insurance so am worried about how much the tests would cost to find out for sure. that said, the blood test is not the one i am that worried about, more about the biopsy of the intestine that they will likely want to do (i hear that is a common test?). anyways.. for about a year, i've been dealing with itchy little spots - that resemble tiny blisters. for months and months, i assumed it was acne, even though they didn't quite look like acne. they appeared on my chest, and the top of my belly right in between my ribcage. the longer i have had them, the more i notice they itch. i take zyrtek once a day to help keep the spots and itching at a minimum (yet they persist). i did go to my general physician because at the time, i convinced myself it was bed bugs. i couldn't really find anything online that seems to describe exactly where my "dermatitis" is. it seems each variation of dermatitis is pretty specific, and nothing seems exactly right. the doctor told me he believes i have contact dermatitis, but i'm not so sure.. he prescribed me with an antibiotic that did help clear up the spots i had picked at in the past when i assumed it was acne, but the rest of the little spots remained. he also prescribed me a steroid cream, which i do feel like helps the spots. but not really. it just makes the spots move elsewhere, or leave temporarily. i have since quit using the cream, after applying it twice daly for about a month and a half.

after a lot of research, i am thinking a gluten allergy may be possible. i have symptoms of IBS, and feel bloated a lot, and have an upset stomach fairly frequently. i feel fatigued every day, even though i always make sure to get 8 hours of sleep. i obviously have some sort of spots that resemble what some with a gluten allergy suffer from, but i'm a bit thrown off by the locations suggested for them. while mine did originally start on my chest and upper stomach as i mentioned earlier - i have noticed it seems to have 'spread' now (or maybe i'm just looking harder now) i find them often, regularly, on my collar bone, my back, and my knees (sides of knees, not back or on top of knees). i feel like i see them on my arms sometimes too - but my chest gets by far the worst of it. and the spots have definitely tripled in the quantity of spots in the last year. i feel like the spots DO get worse when i am really stressed out. they itch. if i don't take my zyrtek, i'll be miserable.

i was shocked to read that celiacs disease or a gluten intolerance can be linked to depression, sore joints, bladder infections, and irritableness. i have extremely sore wrists/hands/forearms/elbows, in particular. i've suffered from depression for ten years, but it has come and gone. lately it seems more prevalent, but i do think it could be partially related to the stress of trying to figure this out, and other factors in my life. but it's definitely something i've always struggled with. i also used to struggle with UTIs on a regular basis.

my next idea is to stick to a gluten free diet for the next two months and see if i feel any better. i realize i have to clear out a lot of my kitchen - wooden spoons, cutting boards, anything that could keep old contaminants locked in and saved for later. i've already switched all my home products to fragrance free products, with no improvement - so i have been researching new cosmetics (check out redapplelipstick.com if you are unfamiliar!), and shampoos and the like. though i feel this will be just as costly as a test to confirm if i have it or not - but then if i do come out having a gluten allergy, i will still have to spend the money on investing in new kitchen materials, beauty products and food. so i feel i may just try it, because it's not going to hurt me to try.

anyways, the point is just to share my story, and hopefully hear some insight if this, to anyone, sounds obviously of a gluten allergy, or even if it obviously screams it is not a gluten allergy. i'd love insight, and maybe your own personal stories on how you discovered you are gluten allergic.

by the way, i'm 28 years old. live in hot and humid houston.

thanks for taking the time to read, i know it's not a short story by any means, lol!
p.s. sorry if there is a topic for this already, i couldn't find one after a quick scroll through!

ellen

[jigsawfallingintoplace]

Hi and welcome to the board
I am sure others will be along to give you some words of wisdom as there are lots of lovely people here - many of them very knowledgable about all things gluten.
I am fairly new to dealing with this myself and have been gluten free (gluten-free) for about 2 months.
I cannot offer any knowledge on your skin condition but what I will say is that gluten (whether intolerant or celiac) can manifest itself in so many ways and symptoms so just becuase your rash is not typical it does not mean that it isnt gluten related.
I live in the UK so thankfully healthcare is free - although standards do vary, basic tests are free of charge.
I am self diagnosed celiac but backed up in principle by my GP - I had already gone gluten-free before blood tests so they came back negative for celiac.
I paid privately for gene testing and my gene test for celiac was positive. This does not mean I am celiac but i have the gene - so that along with symptoms and eradicating symptoms on gluten-free diet points to the highest possibility that I am. To get official diagnosis wouldmean going back on gluten and also a biopsy and I am not prepared to do that as I was so ill before going gluten-free. Many people are in this situation and do not get an official diagnosis.
My symptoms (you did ask lol) were:
A 20 plus year history of IBS related symptoms
skin blisters along hairline/backof neck hairline
absence of regular periods/unexplained infertility
2 pregnancy losses
bloating,hard and swollen tummy
tummy pains (lower tummy)
excessive gas or wind
irregular painful bowel movements
constipation
diahorrea - became more frequent this year
joint pains, stiffness and swelling
no energy - excessive fatigue - could sleep forever
low moods, tearful
bladder problems - felt like infections but all tests were clear
numbness and tingling in my arms and hands
overweight and not being able to shift any
hungry all the time but also feeling sick
sickness in the mornings
irritable
brain fog, getting words muxed up, forgetting what i was going to say, not thinking straight

Gradually I began to put the pieces of a jigsaw together - like youm through research - doctor was useless.
I cut out gluten and everything and I mean EVERYTHING disappeared virtually overnight. periods came back to normal cycle for first time in 20 years. more energy, lifted mood, no bloating, normal toilet trips - basically the lot.

I paid £150 for genetic testing as I figured if i couldnt get a positive through being gluten free, i wanted to see if i fell in the right gene pool for celiac and bingo! just as I had strongly suspected I am DQ2 - 90% of celiacs have this gene so I was told by the clinic that carried out the gene test. They told me it was highly likely that I have celiac.

As you will know, celiac is not an allergy - it is an autoimmune disease. It doesnt go away and the only treatment right now is a gluten-free diet for LIFE.

I have made errors along the way these past 2 months - mainly i carried on eating dairy which i have now stopped for 30 days while my gut heals. This is apparently par for the course.

I am still learning but I am on the mend and a whole lot happier,I thought I was falling apart before and that everyday I had something wrong with me or a new/returning health problem.

I sincerely believe I have been celiac since childhood.

Good Luck with your road to recovery - I think trying to go gluten-free is a good idea as you have no insurance. If you see results then you may find you are content to self diagnose and treat. Be warned though that after gluten-free you may never want to go back to eating gluten again but would have to if you ever wanted to be tested and that going back on gluten can often have really debillitating effects.
I never want to go back - I am just angry this was never picked up by health professionals before as so much of my life would have been different and pain free. I only look forward though - as I know the best is ahead and that is better health all round.

[MitziG]

If you have active spots now, get to a dermatologist and have them biopsy the skin NEXT to the lesions for dermatitis herpetiformis. If that is your rash, than the answe is yes, you have a gluten "allergy"

If you don't have the rash right now, the blood tests are not terribly expensive, and are very specific for celiac disease. You can find the list of the whole panel on this site. Be sure to request the specific tests listed as many doctors only do one or two of the older ones.

If the blood tests are positive, your doctor will probably want to do an endoscopy with biopsy to "confirm" celiac, but it isn't really necessary. False positive blood tests are basically unheard of. If you have positive celiac bloodwork, you have the disease.

If the tests are negative, you probably don't have celiac disease (not guaranteed as false negatives ARE common) but you may very well have non-celiac gluten intolerance. As many as 1 in 14 people are gluten intolerant, to varying degrees, and there is no reliable test for that, yet. So...to find out the answer, you go off gluten, 100%, usually for several months, and see what happens!

Very important that you know that IF you plan on having celiac tests done, you MUST be eating gluten! Antibodies drop very quickly once you stop eating it, and this will cause a false negative. If you are going to test, start eating gluten again right now and do the testing asap!

[Inndie]

I am very interested to read your story, and that you had a genetic test to confirm the gene. I too live in the UK, so would like to know a little more about how you went about that! I have had the blood test for celiac and it came back negative. However, I have been gluten-free for 5 days now and already feel better. My list of symptoms include:
-heavy, painful periods for many years (ended up having a hysterectomy and was diagnosed with something similar to endometriosis - since found this may be connected to gluten intolerance)
-exercise intolerance - developed very poor exercise levels even though used to run half marathons regularly, and feel very ill for up to a day afterwards (headache, depression, pains in muscles and joints (flu-like), insomnia, irritability, feeling of lactic acid everywhere)
- mood swings, depression, irritability
- stomach bloating, wind, alternating constipation and diarrhoea
-restless legs
-itchy weeping scalp and neck although that cleared up a year ago for some reason
- High blood pressure

There are other symptoms, but I won't bore you with them!! I would like to confirm that I have a sensitivity, as the doctors will ignore me otherwise. I have noticed when I go to Greece my aches and pains improve, and it has been suggested that this may be the replenishment of vitamin D which may be poorly absorbed from the stomach with gluten problems. I feel worse in Malaysia - perhaps because of the use of soy sauce which I hadn't realised contains gluten.

Anyway, that's my story, and it's so good to have a forum like this so we can support each other with our experiences....

[KMMO320]

Hi there. I am not diagnosed yet.

I was diagnosed with IBS 11 years ago. I am 35 now, but since I was 17 I have been dealing with, what I call, "Stomach of Death". There are some days when I seriously think I am going to pass out from pain and nausea, and just the running to the bathroom every hour or so is pretty draining on its own.
I have learned to live with it and honestly, it has become so normal for me that its hard to imagine how people can eat and enjoy their meals and go on with their day. I am just THAT used to feeling bloated, gross, queasy and exhausted after eating that I think I assumed everyone felt that way and didn't complain, so I stopped complaining.

I had also always had migraines since I had my first child, 13 years ago, but last year at this time, I had one so severe, I found myself in the emergency room. This time, I really did think I was going to die. I stopped breathing.

They couldn't find ANYTHING wrong with me, and I went home. Since then, I started having chronic sinus/ear infections, pretty bad jaw and tooth pain, and I seem to run a low grade fever spontaneously. It lasts for a few hours, then goes away, then it comes back, etc. The fever, combined with chills and aches and pains led me to think I had Mono or something.
I also felt severely fatigued, like more exhausted than should be normal. I brought it to my Dr and we both thought it was my thyroid acting up. I have hypothyroidism and am on a really high dosage of levothyroxine, 175mcg right now.
My levels came back perfect, so it is NOT my thyroid, and on a whim she took some tests for my Iron, Vit D, B-12 and all that. I am deficient everywhere possible. Since I am also IGA Deficient, and she didnt run a FULL Celiac panel, she is sending me to a GI who I see next week but she really feels strongly it is celiac disease.
I have a family member who has celiac disease and we have been sharing stories and such. I really feel everyone is different. She is VERY sensitive and when glutened, she feels it for weeks.
I havent gone Gluten free yet because I still need to be tested, but I didnt eat any yesterday, or today (so far) because I have been feeling so terrible, I cant stand to be alive...but I have to say that I feel worlds better. I actually have some energy that I havent felt in MONTHS AND MONTHS. I had a relatively normal BM today (sorry for the tmi!) that I havent had in MONTHS AND MONTHS and let me tell you, it is such an "accomplished" feeling that I wish I could just go gluten-free right now and forget the Dr and the tests. I would rather live like this NOW.

[hollylu]

I realized that I had celiac when I figured out that the itchy bumps on my backside were actually dermatitis herpetiformis (my doctor mis-diagnosed this as herpes, but the medication she gave me for it did not help). Since I have given up gluten (5 weeks ago) my DH has cleared up. I do still have abdominal bloating and gas, though. How long will it take this to clear up? Most of what I have read makes me believe that it should improve right away...

[Christine0125]

Here's my story... I pieced it together after symptoms over a number of years.

Diagnosed IBS in my early 20s after suffering with tummy issues over a few months. The GI issues seemed to resolve mostly overtime and I equated it to a "nervous stomach." It seemed to flare up with high fat foods and during stressful periods. Shortly after my son was born I started having very recurrent nausea. It would come and go and I avoided going to the doc for quite awhile assumming it was just IBS rearing it's head and frankly I was busy and not taking care of myself - I had 2 young kids, aging parents with health issues, a job, etc. Finally broke down and went to doc and had tests run on my gall bladder which showed sludge. Surgeon decided to take wait and see approach since my symptoms were not classic gall bladder attacks. Then this past October I woke with horrible vertigo... this one scared me so back to doc and was told it was probably a virus but they did bloodwork and found anemia. I was surprised by the anemia because my diet was fairly high iron. When researching the anemia, I found a lot of hits on celiac disease and realized that I had several other symptoms (some GI symptoms, frequent canker sores, sinus pain type headaches). Anyway... when I went in to ask for the celiac panel run the doc told me she still thought it was my gall bladder but she went ahead and ordered the tests. Sure enough, it's celiac. I'm about a month now fully gluten free... I was gluten free for awhile before that but did a challenge before the endoscopy. I'm definitely starting to see improvements but still have my days when I feel off. We're taking a 2 week vacation (never been away that long) in June and I'm hoping the rest and relaxation boosts my healing.

[alliznelle]

Thanks everyone for sharing your stories! I am still eating gluten because I am still deciding how to handle going about figuring this out. I do still have the rash - it sometimes fades and isn't as bad, but it is always there, and increasingly gets worse and more widespread. So I will probably inquire about skin testing first, though maybe I will just do the blood test and skip the endoscopy. Thanks again for sharing your stories and info! I really appreciate it. Seems like a tricky one to sort out for a lot of people. I will keep you guys posted for future people in my position, but I have another expensive appointment coming up so that will postpone my figuring this out - which is why I was considering just changing my diet and seeing if it made a difference while I wait to get in for testing. Thanks again peeps!