Weird Lumps On Face But Not Blisters?

[Nenee]

Hi

I'm due for my cameras through the mouth and bottom are with biopsies on Thursday etc

I had peri oral dermatitis once a while back for months but never had it since but I keep getting red lumps sort of under my skin but I can see them on my face all over my face cheeks chin forehead etc then it will go the next day only o return. I thought it was creams but I've tried so many but I keep getting these lumps.

I also get sores(odd one or two) in my neck line shoulder or bottom that gets a scab on it but I do pick :-(

I have lots of other symptoms but just wondering what a gluten rash looks like as I don't have th other type which seems severe like blisters and loads of them

Nenee

[eatmeat4good]

DH can present many ways. Not always typical of what you see in the pictures of DH where blistering is severe. I had very minor outbreaks for years before it turned into the typically severe blistering you see in the photos of DH. Mine was mainly on my face but I have had it other places. the places you are describing, lower back, buttocks and back of neck at hairline are typical of DH. The face is less common, but it does happen. My chin and forehead were the worst. Look at the DH photo bank and the Pinned thread at the top of the DH forum for descriptions of how DH can present.

Are you thinking of going gluten free? Are you thinking of getting a biopsy? If you want a biopsy you will have to stay on gluten in order to test positive. The biopsy must be taken from next to the lesion.

Do your "sores" have raised edges? Do they itch or burn? These are indicative of DH.

I had DH for 7 years. I healed for a year and a half. Now when I get glutened I will get a bump under the skin like a mosquito bite in places where I have had DH before.

You might have to eliminate gluten for quite a while in order to see a difference. The IgA antibodies can stay in the skin a long time.

Can you post pictures?

If you really do have DH and continue eating gluten, you will likely eventually present with the more severe blistering that is commonly recognized as DH by dermatologists. The milder forms do not seem to get diagnosed very often. Sometimes people suspect DH and go gluten free and the rash clears. That is another way to know if you cannot get a medical diagnosis.

Welcome! Lot's of well informed people here. I'm sure you will get other responses soon!

[squirmingitch]

Nenee, you state you are getting an endoscopy w/ biopsy on Thrusday. What brought this about? Did you have a celiac panel done on your blood work? If so, what were the results of that? Do you have a copy of the test results? If you do it would help if you posted them. there are those here who are very good at reading them but you also need to post the ref. ranges too as all labs may be different.

Tell us about your other symptoms. We're listening.

[eatmeat4good]

Often a DH Celiac will not be positive on intestinal biopsy, so even if you are negative for Celiac, you might want to give the gluten free diet a strict try for say, three months or so to see if what you have is DH.

[squirmingitch]

Often a DH Celiac will not be positive on intestinal biopsy, so even if you are negative for Celiac, you might want to give the gluten free diet a strict try for say, three months or so to see if what you have is DH.

What eatmeat says is true.

[TaraMooreMichelle]

I have had Celiac Disease since November 1991, diagnosed with a biopsy at Salem Hospital in Ma.. I am now 42 and the last two years I have been getting a rash (similar to a mosquito bite), but no blisters???. It happen every May/June and then again in the cold winter months. It is itchy and I am bad and pick at it. I go to a local group of dermaologist and I always tell them that I have celiac disease but they always dismiss it as a type of dermatitis and give me samples and send me on my way.

The skin problems I have been having seem to be getting worse as I get older and I am very aware of what I am eating all the time and must say I very rarely cheat because it just isn't worth how terrible I feel the next day. I also feel that as I get older, my anxiety is worse as well. I know that celiac disease does a number on our nervous system and I always wonder how celiac disease will continue to effect my overall health in years to come.

Just moved into a new house and am unpacking boxes so I better go for now. Thank you for listening.

[squirmingitch]

Tara, you say you very rarely cheat on the diet. Here's the problem --- every time you cheat or accidentally get glutened or cross contaminated (cc'd) you are making IgA active in your skin that is if what you are experiencing is dh or the predecessor of dh. The antibodies can stay in our skin for literally years. So it's not like the gluten you ate 6 months ago is not affecting you anymore. It's there. It's got the antibodies in your skin all fired up. With dh it can go into & out of remission any old time it pleases. The only way to conquer it is to be absolutely strict & not get an iota of gluten. DH is extremely sensitive to the tiniest amounts of gluten. Perhaps you are getting very lightly cc'd, not enough to make you have GI issues & such but enough to fire up the skin. Generally when celiacs get dh they have less GI issues & less severity when they do have them. Also, have you checked your topicals for gluten? That can make a big difference in dh. Shampoo, conditioner, lotions, moisturizer, lipstick, soap etc.....

[Nenee]

Hi there

My doctors finally took note that my health is suffering and only because I felt pretty low depression wise and had low ferritin levels 5 years in a row, I'd lost weight and have diarreah first thing in the morning and it's dark sticky and foul smelling so I was referred to the bowel clinic

The doctor looked at my history and symptoms and decided he wanted to do a colonoscopy sigmoidoscopy blood test scan and biopsies. I'm due to have these Thursday and I'm hoping they will have answers

Iv suffered with IBS. Symptoms for over 15 years here are my symptoms sorry there's many:

Depression/anxiety/mood swings , brain fog dizziness a feeling of not with it And feeling really poorly that nothing worth getting up for

Bloating straight after bread, gas, discomfort and heavy feeling loose stools which smell disgusting and are sticky eww

Iv had peri oral dermatitis once rash all around my mouth that went after antibiotics but I now get these red lumps under my skin that you can see in different lights they are not itchy or have pus just lumps they are on cheeks chin side of forehead ,,, my skin also ITCHES. Like crazy early morning like I have insects crawling all over me I have lumps on my neck in my hair line but only a few I then scratch them and a scab forms they can be there for ages if I keep scratching. Iv had itchy palms to but not rash and itchy scalp but nothing there. Whilst pregnant I got lumps more on my buttocks and top of shoulders which have left marks.

I have dark shadows in the corners of my eyes

Very lethargic especially after eating wheat I feel very sleepy

Diagnosed with fibromyalgia I have pain in my neck and shoulders most days but it can go for a bit and come back(it was improved on a low carb diet)

Dry eyes

Thinning hair and notice I loose some

Ferritin levels low for last 5 years

Reactions to chemicals I sneeze and have itchy nose if I breath hairspray etc iv suffered with lots of sinus infections blocked and itchy nose to

Sores in my mouth my saliva gland on the bottom swelled up and was sore and my gums also my teeth have become very sensitive to

Bad pmt breast pain cravings for sugar

MIGRAINES. and dull headaches a lot which make me feel depressed I feel chocolate can set them off

Dry skin on my legs and front of my legs are dry scaly and itchy even when iv taken omega 3

Rumbling gurgling noises in my stomach after food

Disrupted sleep

And generally feel like I have a hang over

I had the blood test for celiac about 2 years ago and came back normal but not biopsies etc

I did a blood test for food intolerances about 15 years ago said I was intolerant to wheat and gluten egg whites and dairy I cut out dairy and only eat whole meal bread which I seem to be ok with in small amounts I did that up until now but iv got so much worse( I didn't really take the test seriously as so many people says it was accurate as done through a company and not my doctor as they say you can't do accurate intolerance tests) so I thought its rubbish and carried on for years eating wheat.

But I feel my immune system is in a mess and I feel pretty poorly. I'm worried about the depression side as I have 3 children 2 under 5 years and I just can't cope.

I feel going insane and have been back and to for years with different issues and getting no where

I think my husband thinks I'm just mentally ill but I no I'm feeling like this cause I feel so poorly.

Im worried because I did low carb for 4 months the test will see villi damaged. (I did wat small amounts of wheat though) and for 4 weeks before my biopsies etc iv eaten wheat about 2 to 3 times a day and boy I feel horrid )

Iv also put 4 lbs on in weight since I started eating gluten I thought celiacs were supposed to lose weight it's the opposite for me

Phew a lot there

Should I ask for any other tests?

[squirmingitch]

You certainly have symptoms consistent with celiac disease. Okay, the full, current celiac blood panel is this:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

That's the blood work they should do. They also should do a minimum of 6 biopsies for celiac disease during the endoscopy.

And if all that comes back negative then you need no one's permission to try the gluten free diet. YOU are in charge! Give it a good 6 month trial.

I so feel for you dear. The depression is common for celiacs pre gluten free. So is the feeling like you're going insane. So is fatigue. So is well..... everything you mentioned. You are NOT insane. This is NOT all in your mind.

What you need right now is a great big hug!

((((((NENEE)))))))

[Nenee]

Thank you so much

Finding others who no what I'm going through and actually understand is a relief

I don't no how to approach my doctor telling him to do these tests I'm from the uk and our NHS is not great compared to private medical care.

On the sheet iv got for bloods all he's written is Tga nothing else

What does IGA and IGG test for?

I will ask them to take at least 6 biopsies does this heal ok?

I'm worried I don't show as celiac then I will look like I am just mentally ill because there's no test for gluten in the uk they say is accurate.

I think I had intolerance test ige? Which said I had gluten issues but my doctors say it's inaccurate.

I just want a solid diagnosis so I can then say to people this is why I'm always ill

I will be going gluten free though iv never

[Nenee]

I had my camera tests and he said my bowel looks normal. He took random biopsies I think he managed to get one from the small bowel he said?

Would someone with celiac disease gave a normal looking bowel to the naked eye but then show up in the biopsies?

Did any one have a normal camera but the biopsies showed celiac? Iv got to wait 4 weeks now.

Since iv given gluten up my mood has lifted and iv stopped getting spots on my face :-)

[squirmingitch]

The bowel biopsy is not for celiac disease. The celiac disease biopsy comes from the small intestine through an endoscopy --- that's the one they go down your throat with. the celiac damage is in your small intestine not in your bowel.

[luckyme2]

Hi,I'm one of you!

I have sore rashes on skin with raised borders. It heals very very slowly and I don't know where I still get the glutens. About Christmas I changed my diet dramatically because I hated my looks in the mirror. I was looking for Omega 3 fatty acids and found them in Chia seeds and flax seeds (the flax I let overnight to soak in a water and eat daily). Cut off all the dairy products and thus healed my mouth corner rashes. + no wines,no sugar,no baked or animal fats. All my diet consists of poultry meat without skin,steamed vegetables,coffee only freshly ground(by myself),organic. Boiled eggs. And different boiled peas,surprizingly they don't cause me problems. My diet is very boring and I'm dreaming of chocolate but I know it will be worse after. Sure,I take some gluten-free snacks time by time and I can tell I regret it after. I think it's still not the time for me. Anyway,I feel much better from inside and outside,my skin is somehow nurtured and thicker.

[squirmingitch]

Good for you luckyme2! It takes time & we just have to wait it out. Welcome to the board!