Celiac?

[lilly21]

hi

ive been having upper abdominal pain for two years now, it feels like acid and the pain goes through to my back, it feels like its in my stomach but also under my right rib.

ive had loads of tests and nothing has come back, for the last week ive now got a rash which looks like eczema but it itches like hell!!!! i want to scratch it all the time.

ive lost 2.5 stone in the last two years, when i get an episode attack i feel so tired with it and i feel like someone is squeezing my stomach.

do i possibly have celiac???

[squirmingitch]

Yes, you possibly have celiac. You mention loads of tests. Tell us what tests you've had.

[eatmeat4good]

That is how all my symptoms started.

The rash was the worst.

Yes, it could be Celiac.

Ask for a Celiac Panel blood test from your Dr.

Then ask for the biopsy of the rash next to the lesion.

If these are refused then do yourself a favor and go gluten free.

It worked for me and I was sick a lot of years.

I hope it works for you too.

[lilly21]

hi thank for the replies

ive had:

anemia blood count, enzymes, h. pylori, liver tests. i have been tested for celiac a yr and half ago, but the docs reply was, well you might have celiac it dosnt really show much but they can show inconclusive??? That was it!

ive also had an endoscopy but it didnt enter the duodenum and ive had a colonoscopy inthe large colon. Ive also had two ultrasounds. They checked my gall bladder as the pain seems to be right where the gall bladder is. However the pain feels like a tight fist under the right rib and then i have what feels like acid in my stomach but on the far right side which penetrates through to my back. The ultra sounds showed no gallstones on both occasions.

The pain does not seem to hurt much more when i press it, and almost feels like i cant quite locate it as it feels really deep.

They then said well ive got IBS and its stress related.

When this first started i had the pain constantly for about 3 - 4 months. it then slowly went away and then in last december it started again. I get it for about a week and a half and then it disappears. then it tends to come back again for several days.

my diet is very bland as im too scared to eat anything heavy or rich, as i think it may set it off. ive lost over 2.5 stone, and i lost a lot very quickly when the pain started.

This week ive developed what looks like eczema. Ive been looking at photos of DH and mine are small pimples, they dont form in to blisters and they havent burst. But they itch like hell!!! they tend to go down a bit but then when they are up they really really itch. They are on the hands, knees and thighs, are few are around the ankles and feet. I have none on my upper body or back. Is that DH or just common eczema?

ive tried e45 cream for eczema and it seems to help a bit, but i still have them.

ive been so ill for coming up 2 years now, and its made me depressed and i ended up taking anti depressants for a while.

This did start are 3 months of breaking up from a 10 year relationship, but right now i dont have anything to be stressed about and im not depressed. i have a good job and im pretty happy.

Any thoughts please???

[ravenwoodglass]

If your doctor did a celiac panel and said you might be celiac you were likely a low positive. Perhaps, as long as you are still eating gluten, you should have those tests rerun. After all celiac related testing is done then do give the diet a good strict try.

[Bubba's Mom]

I had pain very much like you described. I had an ultrasound on my gallbladder and was told I had a bit of sludge, but no stones. I was told it was fine. It wasn't fine though. It continued..even after going gluten-free.

Finally. I was given a gallbladder function test. This is called a HIDA scan. It measures how well the gallbladder squeezes the bile into your digestive system. If yours is functioning at a low level it could be your cause for the pain, and sensitive digestive system.

The bad news is..gallbladder dysfunction is common in Celiacs. here's an article on it.

https://www.celiac.com/articles/119/1/Gall-Bladder-Disease-and-Celiac-Disease---By-Ronald-Hoggan/Page1.html

I'd say..ask to be retested for celiac? AND if you're on an acid reducing medicine, it helps slow the gallbladder. You may not need to be on it? Many of us are put on acid reducers for GERD, when the problem might be that you have too little acid to digest things well, rather than too much? They both have very similar symptoms.

[itchy]

lilly, the knot in your stomach that you describe is very much like what I experienced many years ago. I had it for a couple of years, then gradually progressed through a variety of symptoms that I now know were coeliac symptoms. Eventually I got DH.

By all means get some more testing, but if nothing turns up, you might find relief from a very strict gluten free diet.

[lilly21]

Well ive been back to the doctors, for the millionth time. He said it was mild eczema, i have cream for it. I am also having blood done in the next few days including celiac.

i am getting so tired of going to the doctors and them not doing anything. I guess its hard when you dont know what it is. But i feel like im wasting my time now going to them.

The last doctor i saw asked me if i had a boyfriend, as that is supposed to make me all better???? They all think its stress. But i have no stres at all in my life. The only stress is this pain and i never know when im going to get it.

I had about 6 mths pain free and then it started again just before xmas. Its been every month since, its will start by making me feel tired and have pain in my stomach then feel like indigestion and then the pain under my right rib will start.

then it slowly disappears again.!!!!

i ahve a feeling i may need to try gluten free, as i know they will just say all the bloods are fine as they always have.

If i go gluten free how long is it before you start noticing anything?

[itchy]

I think it will vary.

My gastrointestinal symptoms were 95% better literally within 3 or 4 days. My DH symptoms stopped getting worse and were detectably better in a couple of weeks. The DH symptoms have taken almost three years to go away however.

Experience varies widely between people, but I think that you will likely find enough relief that you will never want to touch gluten again in your life.

In the beginning it is hard to recognise all the hidden sources of gluten. It is usually the last traces of gluten that you eliminate from your diet that make all the difference. Half way isn't good enough.

Sensitivity seems to vary a lot. Some people appear to be sensitive to skin contact (I'm not, as near as I can tell). Some find that high iodine levels are involved, others do not.

In the end it doesn't matter what people call your ailment, if avoiding eating gluten fixes it, you're on the way to recovery.

[squirmingitch]

I agree with what itchy said.

[lilly21]

well, ive has the tests i am now waiting.

Im feeling awful today, i have that funny sensation of pulling in my throat. The feeling of acid in my stomach.

Ive just made another appointment at the doctors, for them to make me feel like this is all in my head as they have no idea what it is.

I just think this thing is going to last forever

Im so fed up of it

[Di2011]

I will ditto with itchy and squirmyitch on their advice. My experience is very similar. If you get a diagnosis you'll be a lucky one. But there are so few of us that the medical community doesn't known much about us. Unusual GI issues (not typical celiac) plus the unusual skin condition is just too hard for medical personnel.

I would recommend you stop gluten foods immediately. The longer you eat it from now, the harder and longer it is to get out of your system. It sounds like your DH is advanced enough that you will have active legions to biopsy. Get to the dermotologist on a "emergency" appointment so that you can get testing.

All the "wheat derived" ingredients affect me so I avoid all the 400's and 1400's product ingredients (many wheat/gluten derived) and almost all "gluten free" products.

I, like others, avoid other stuff. For me it is salicylates and corn. Both of these create an acceleration of the itching. I don't typically avoid iodine but my intake is light so it may also be worth considering.

The worst thing about this condition though is the psychological. It is so all day/night in your face that for me the worst effect is how my sanity is handling it. Keep sane and sleep whenever you need to or can.