Rash.. Symptoms. Can I Be Angry?

[IowaMom]

I recently started reading these boards after a PHARMACIST stated that my rash might be a gluten allergy. A little over three weeks ago I had an episode of hay fever that was horrible. Tried everything to control the symptoms, then it rained and it was all fine. While having the hay fever, I stopped eating starches. I have always found in the past that I have more energy and feel great when doing so. A week later I had a roll. I broke out in a rash that started with burning pain. Then the spots came. What blew me away was that they were on each side of my body in exactly the same places! They burned and then started itching like crazy. I then thought about what I had done different and the only thing was the bread. So I cut bread and starches out again. That's when I went to the drug store to buy some cream without alcohol. While the pharmacist was helping he asked me if I have a gluten allergy. This got me thinking. I then went home and look up everything on the Internet... I saw pictures of my rash and I saw my health before my eyes. I am angry. I have suffered for many years. I am 38. When I was a child I was in and out of the hospital a few times with stomach problems. Diarrhea, constipation and stomach pain. I've had my appendix removed and then was told they weren't the problem, but they were inflamed. I had a clotting disorder (-12 factor) in my blood. I was diagnosed with colitis in 1997 after spending a week in the hospital. I went through 7 years of unexplained infertility. I conceived one child through in vitro with ICSI. I had to have a C-section. While having the C-section my OB told me I have a lot of "unexplained" scarring, including my bowels being adhered to my uterus. I have had ovarian cysts that have ruptured, one taking part of my ovary. I didn't have enough progesterone, so I had to take daily shots up until my fourth month of pregnancy. I was also told that I have high levels of prolactin. Two years ago I was diagnosed with osteoarthritis in my neck, spine and hip. I had a blood test done for rheumatoid arthritis. My level was high so they sent me to a rheumatologist. She said I didn't have it but said I did have a higher inflammatory level. She said the numbness in my hands and feet might be from pressure from the bone spurs. I just gave up. I have been anemic twice. I have fatty stool or just mucus at times. I always put this to being from colitis, along with the stomach pain, diarrhea and constipation. Last year I was put on Lexapro for anxiety. I have been off gluten for a little over a week, most my rash is just colored patches with some itching. I feel great. Not tired, no pain, no gas, no bowel problems, I even slept through most of the night last night. I have also lost nine pounds, which I know most was fluid retention. I am going to make a doctor's appointment to be tested. I truly believe the gluten is doing this to me. Why did it take a pharmacist to point it out? My bio son who is nine now had to have a cat scan last year. Same problems I had when I was a child. He also suffers from fatty stools and diarrhea. They couldn't find anything wrong with him. Why isn't gluten testing common?

Cindy

mom of nine

Adoption is a gift from God

[mommida]

Unfortunately your story is too common.

I hate to break the bad news to you but you have to stay on gluten until the testing is over. (There has to be enough damage to be detected by the IMO unreliable tests.)

You do not need an official diagnoses to be on a gluten free diet.

You have every right to be angry. Come to terms with your past medical history, put it behind you as soon as you can. Start the gluten free diet when testing is over or you decide to trust what your body's reactions are telling you. I hope you will find healing and information here from this site.

Welcome!!

L.

[Ursa Major]

Hi Cindy, and welcome to these boards. Yes, it is quite acceptable for you to be angry. You ought to be. I was angry too, when I found out at the age of 52 that I had been gluten intolerant all my life and had all the symptoms from the age of three, and no doctor figured it out in nearly fifty years!

I am sure my eight miscarriages were due to gluten intolerance as well. All the pain and illness I went through was due to doctor's ignorance on celiac disease and gluten intolerance.

Your symptoms sound typical of dermatitis herpetiformis and celiac disease. And of course, it's genetic, and your son must have it as well.

Unfortunately, if you want to do the official celiac disease testing, you need to go back to eating at least four slices of bread a day, or you'll end up with false negatives. It is up to you if you want to do that. I didn't, because there was no way I was going back to eating gluten.

If you choose to be tested, you should go gluten-free afterwards even if you test negative for celiac disease. Because there are lots of people who are gluten intolerant without officially having celiac disease (which is just one manifestation out of many of gluten intolerance).

Or you could have your rash biopsied. If you get an official diagnosis of DH, you automatically have a diagnosis of celiac disease. Because only celiac disease will cause DH.

[heathen]

so sorry that you have been so sick for so long... and none of us know why they don't test for this. the good news is that you can start feeling better soon, although you don't want to cut out the gluten before being blood-tested. by the way, you have a great pharmacist!

[wowzer]

I know how you feel. I just figured this out at 52 myself. I did have a negative blood test, but went gluten free anyways. The more I read on this site, the more symtoms I realize that I have lived with all these years. At first I thought I needed an official diagnosis, but for me the gluten free diet has been enough proof. I do have a little sister that was diagnosed celiac at a year old. I hope that you get an answer soon.

[April in KC]

Welcome! I have about a 6-week head start on you. Your post sounds so familiar...except more painful in some ways, because of your more severe fertility issues. I am so sorry. I wish docs knew more about this. Kudos to your pharmacist for knowing one of the signs.

I am 34, had stomach pain and elbow rash as a child; had an endoscopy b/c of difficulty swallowing as a teen, had ovarian cysts and painful endometriosis; had difficulty TTC my first child, had elevated prolactin afterwards, then had a total of three miscarriages preceded by mouth sores; sticky blood (ACA+), then blessed with two more children while on aspirin.

My (brilliant, humorous, moody) six-year-old eldest son is thin, is physically weak, has loose stools and has a life-threatening food allergy. We see lots of physicians (pediatrician, PT, OT, behavioral, orthopedist), but no one ever suggested testing him for Celiac.

I started figuring it all out recently when my 10-month-old nursling son developing food allergies. I started to rotate foods out of my diet and inadvertently wound up on a diet that contained LOTS of gluten (plain pasta, etc.). All of my typical "bad" symptoms got magnified. I couldn't concentrate at all--my brain buzzed or else it was like every noise in the house was at an equal volume and I couldn't hear myself think. I would fall asleep in the afternoon (after lunch). I rubbed my eyes and head a lot; there was some kind of feeling of tension all the time. I had a mouth full of mouthsores--new ones would pop up before the old ones healed. I started to have urgency to go--and started losing weight. My old childhood elbow rash came back.

I started to search the internet and found information on DH (the rash) and Celiac. I asked for a blood test from my immunologist. I tested positive for AGA-IgA, but not AGA-IgG or endomysial antibodies. Still, he said I was at minimum gluten intolerant, and I should see a GI to get evaluated for Celiac.

I had my six-year-old tested. He came back positive for AGA-IgA, AGA-IgG, Reticulin and EMA--every test the pediatrician ordered was positive.

My son & I went gluten free after the tests. I felt great almost instantly, and my son was showing behavioral changes (positive) by the second week on the diet.

My first GI appt. was this past week. The GI doc saw my photos of my elbow rash--BTW, that seemed to be very convincing for him. He reviewed my history and said that he thinks I do have Celiac disease. He is going to scope me even though I am gluten free. He said that, although I am probably on my way to being healed after 6 weeks gluten-free, he thinks it's a good idea to screen me for malignancies and get a baseline.

My son's first GI appt. is next week. I expect a fight to put him back on gluten. At least I can argue that my own GI is willing to do the scope without it.

I asked my GI about what else I should do re. vitamin levels, thyroid check, and bone scan, and he said those are all good things to check. He ordered some tests to be done the same day as my scope.

I had my two younger kids tested. They have both had symptoms, but they tested negative. I am having the three-year-old tested through Enterolab and should get the results back sometime this week.

Good luck on your next phase of your journey (once your go gluten-free for good). Have fun feeling good. Do not despair if you get gluten symptoms from time to time. You may become very sensitive to small amounts of gluten once you're gluten-free. I have become sensitive to cross contamination in many processed foods. I found out that some things that should be gluten-free are not.

Welcome again.

April

[ravenwoodglass]

Welcome to the board. You've found a great place for info and support.

Yes, you can be angry and sad. But you can also be glad that you have found the answer in time to prevent a lifetime of misery and permanent problems. Especially for your son. Life would have been so different for mine if I could have somehow known.

[SpikeMoore]

You ask some very good questions, the most important is why is this not tested for more frequently? I think most doctors are still practicing in the 1950's with their knowledge of this. And we tend to believe them, trusting that they know everything. We know our bodies better than anyone and there comes a time when you have to learn to listen to them, example when my gp said "your blood work is neg, therefore you do not have celiac". I ignored that and continued gluten free and have never felt better. It is also helping with endometriosis which is linked to gluten intolerance.

Many of us have had those light bulb moments when a chance remark made by someone triggers us to do the research and figure things out on our own.

I think we all understand your pain and anger. But if you can put it aside and move on after you work through it, you'll be better off.

Read lots and help yourself heal and feel empowered.

[IowaMom]

Thank you all for you support and motivation! I really do appreciate it. I will get to the doctors' and go from there on whether I should be tested. I am most concerned for my bio son. I don't want him to have the same health issues as I did growing up. When he was 2 1/2 I had to have his teeth capped. When I first went to the pediactric dentist he made me feel really bad, pretty much blaming me for the problems with my son's teeth. After he came out of surgery he was super nice to me and asked if enamel problems ran in my family. I told him there was, my mom and her seven brothers all ended up with false teeth before 20. I have had numerous problems and have fought to keep mine. He told me my son has an enamel problem. He gets extra trips to the dentist. I am now concerned about some of my adopted sons. They are very short statued under the ideal height chart. Their bio dad is 5'1 and bio mom is 5'2. She has lupus. One of my adopted son's was born three months premature. He weighed 2 1/2lbs. He had diabetes when he was younger (he is now 11) out grew it. Was very "chunky" while diabetic. He is thin as a rail now. He had to have his appendix removed two years ago. Fractured his collar bone last year and battles mouth sores. I have him take Ly-sine to help with it. He is the only one of the sibling group of five that is not diagnoised adhd or depression. He was held back for a year. So was my daughter (his bio sister). There was no drug use while mom was pregnant and none of the children were born drug addicted. I kind of wonder now about gluten due to mom's lupus, being short statued and some of the medical problems these children have endured.. I am going to have them checked also. My youngest adopted son is five he has the mentality of a three year old. He just now fits into 4 yr old clothing and he will be turning six in July. He was diagnoised failure to thrive. He is severe adhd (has an aid at school) and is reactive attachment disordered. I think putting my home on gluten free will be a benefit in many ways. We are a caffene free home, that did wonders. I have always done fruits and veggies as snacks. We occassionally do cookies and such. I am a weightloss counselor so I am picky about foods. But, I feel this will be a huge challenge. Any suggestions will be very much appreciated. I have eight children in the home. Any ideas?

Take Care,

Cindy

mom of nine

adoption is a gift from God

[Ursa Major]

Yikes, it sounds like your WHOLE family has celiac disease, including all of the adopted children! I suggest having them all tested. But as I said before, if the test results are negative, just make your house gluten-free. ADHD and depression are both common symptoms of celiac disease, as are enamel problems. Failure to thrive should alert any doctor to test for celiac disease! It is extremely common with babies and toddlers who have celiac disease.

I hope that on the gluten-free diet at least some of your kids will start growing normally, and will lose their diagnosis of ADHD and depression. In fact, that is very likely to happen.

Here is a link to Nini's website. She compiled what she calls her 'Newbie survival kit' for celiac disease, which is invaluable for people just starting out on the gluten-free diet. Scroll down to the bottom of the page to find the files. Open Original Shared Link