Increasing stomach problems

Hi Debbie

I was diagnosed with Celiac 5 years ago. My symptoms were very much like yours. Very itchy especially my back, cramps and hurting stomach and foul BMs. And do not listen to your GP...does not always have to be diarrhoea.

Good luck with the blood test, hope it's not Celiac. Before you stop eating gluten You may want to consider an endoscopy as well. Someetimes blood tests can have a false negative and a biopsy is the gold standard for Celiac testing.

Also, if you're negative you may want to try gluten free for a month to see if it helps.

Let us know how it works out

Bob

Bob

Everyone's symptoms are different Debbie.  There will be lots of people having the same symptoms as you. Also, just as Bob says, don't give up gluten immediately as the blood tests are not as reliable as having an endoscopy with biopsies. My blood work was negative but when I had my endoscopy it was positive. 

Let us us know how you get on.

It's frustrating, to be sure! The process can take a long time, especially since there's suffering through the testing and the waiting. But, hang in there - you're doing the right thing!

GL on Thursday - and please keep us posted!!  HUGS

Hi Debbie,

It took me almost 20 years to figure out my skin condition was related to

Dermatitis Herpetiformis.  You can look it up.  I had sores, itching, and lesions that lasted for months.  I went to dermatologists who tested me for cancer, diagnosed excema, adult acne, told me to take Benedryl for the extreme itching, and told me to just not itch my skin, which is almost impossible.  I couldn't go out or go swimming because it was so severe.  When I was tested for gluten sensitivities and stopped eating gluten, my skin cleared up in about 10 days.  If I eat gluten by mistake, I know because my skin erupts again.  You might ask your doctor on Thursday, although they are not that knowledgeable.  Here's something I copied below.

Dermatitis Herpetiformis

Intense itching. A burning sensation. Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease.

One such person is Rory Jones. Although plagued with celiac-related ailments including joint pain, thyroid disease, and early-onset osteoporosis, she never experienced intestinal symptoms and had no idea she had celiac disease. Then came the increasingly frequent appearance of itchy sores on her hands, which eventually spread to her face and arms. “The itching would wake me up at night,” said Jones, who sometimes bled from scratching in her sleep. “I wanted to scratch my bones.”

Dermatologists, allergists, and other specialists couldn’t determine the cause of her skin outbreaks and other symptoms. Another 4 years passed before she was diagnosed with DH and celiac disease.

Celiac and the Skin

How does a disorder that damages the intestines show up on the skin? When a person with celiac disease consumes gluten, the mucosal immune system in the intestine responds by producing a type of antibody called immunoglobulin A (IgA), explains John Zone, M.D., chairman of the Department of Dermatology at the University of Utah School of Medicine. As IgA enters the bloodstream, it can collect in small blood vessels under the skin, triggering further immune reactions that result in the blistering rash of DH.

Telltale Signs

The first clue that a skin eruption may be DH is that “it itches like crazy,” said Zone. “People are digging at themselves.” As a result, the blisters are almost always broken open by the time a DH sufferer seeks medical help.

The second characteristic sign of DH is its location on the body. Lesions most often appear on the extensor surfaces—the forearms near the elbows, the knees, and the buttocks. The outbreak of lesions also tends to be bilateral, meaning it appears on both sides of the body.

The grouping of the lesions provides a final clue. Although DH is not caused by the herpes virus, its lesions resemble those of herpes, hence the word “herpetiformis.” In both conditions, lesions form in small groups.

Still, DH is often confused with eczema, a common inflammatory skin disorder that, like DH, results in an itchy rash that is often scratched raw.

A Selective Disorder

DH can affect people of all ages but most often appears for the first time between the ages of 30 and 40. People of northern European descent are more likely than those of African or Asian heritage to develop DH. The condition is somewhat more common in men than women. And men are more likely to have atypical oral or genital lesions.

Diagnosing DH

For Jones, the diagnosis of DH came about in an unexpected way. An endocrinologist became suspicious of the unusual severity and early onset of her osteoporosis. In an effort to find a cause, her doctor sent a blood sample to Peter Green, M.D., director of the Celiac Disease Center at Columbia University, who was conducting a random screening for celiac disease in osteoporosis patients. Jones tested positive for the presence of antibodies that often indicate the presence of celiac disease and was scheduled to undergo an endoscopy to confirm the diagnosis. “At the hospital, while Dr. Green explained the procedure, he saw me scratching my hands and face,” said Jones. Green suggested she have a skin biopsy for DH. The endoscopy results were inconclusive but the skin biopsy was not. She had DH—and an answer to the source of her bone, joint, and thyroid problems.

A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA.

Blood tests for other antibodies commonly found in people with celiac disease—antiendomysial and anti-tissue transglutaminase antibodies—supplement the diagnostic process. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need an intestinal biopsy to confirm the diagnosis of celiac disease.

Treatment

The rashes caused by DH can be controlled with antibiotics such as dapsone. “What’s most interesting about DH is that the rash itself responds dramatically to dapsone, usually in 48 to 72 hours,” said Zone. This dramatic response—another hallmark of the disease—was once the basis for diagnosis, before skin biopsies became the norm. People who can’t tolerate dapsone may be given sulfapyridine or sulfamethoxypyridazine instead, although these drugs are less effective.

A strict gluten-free diet is the only treatment for the underlying celiac disease. Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further DH outbreaks. For people like Jones, who elected not to use dapsone, relief comes gradually as the diet does its job.

Jones’ circuitous path to a diagnosis is a common one for people with celiac disease. According to Zone, more than 95 percent of DH cases are misdiagnosed as eczema. Thankfully, once diagnosed, relief for most people with DH will come through treatment and strict adherence to a gluten-free diet.

Hi Susie. My problems started with a symmetrical itchy rash on my legs at the time I went to the doctor who gave me a cream to use but it didn't really do anything the rash would flare up settle but not go this went on for ages then it just disappeared. The itch was so intense you just could not scratch it.

I then underwent investigations for a painful eye which turned out to be dry eye caused by skin problems.

I also had an outbreak on the top of my feet which I saw blisters for the first time and these areas are taking a long time to heal.

My head and underarm itching have been going on a long time I'm only now linking it. I really want an answer but I know it won't be quick. I have never been so tired in my life I usually run two or three times a week but just haven't got the energy. I have always thought I had an interactive thyroid like my mum and sister but results not showing this. Well we shall see what will be will be I would really rather it wasn't celiac as I love cake lol but we will see

Hi Debbie

I am sadly amused when well meaning but ill informed doctors say, "it can't be Celiac because ..."  Debbie, that very statement goes to show that they probably do not know enough about the disease to be working with them.  Celiac is a chameleon; it changes colors and is very hard to distinguish from one person to the next without a full endoscopy.  It changes symptoms from person to person and from time to time.  You may be affected one way one time and an entirely different way another time.  It is inconsistent and relentless; however, YOU ARE NOT ALONE!  Do not trust the labels on foods - call the manufacturers.  If they say they meet government requirements, run away.  If they say there is NO GLUTEN AND IT IS PRODUCED IN A GLUTEN FREE FACILITY, there might be a chance it is okay.  You must be this diligent in determining what you can and cannot eat.  I'll keep you in my prayers!  

Well all blood tests were normal doctor thinks I have eczema and that the cramps and oesophageal spasms are ibs. I am going to give their way a go and see how it goes if it works ok if it doesn't I'll go back they are nice enough but want to put an easy label on it. Watch this space