This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
So your IQ has been off a bit lately, huh? That made me laugh...in empathy I assure you. I had minor GI symptoms but major itching, joint pain (especially hips), depression, debilitating fatigue.... all the rest of the non GI stuff. Diagnosed 2 months ago by bloodwork. The occasional big D with urgency stopped within a couple of weeks. However, we are sure that my intestinal villi are damaged enough that malabsorption is an issue. I have multiple vitamin and mineral deficiencies that are being treated, so yes you can certainly have damage without GI symptoms bad enough to mention to Dr. About six weeks ago I was dx'd with Hashimoto's too. ( the autoimmune type of hypothyroidism.). I would say that this is fairly common in celiacs.
I really feel for you. I don't have any words of wisdom except to say you are fortunate to have found the most well informed, compassionate bunch of folks right here. Keep coming, keep posting and take it one day at a time.
Thank you so much. Yeah, the nights can be killers. For the last year or so I have gone to bed with husband then migrated to living room couch. I have even made sure I had something like a hair pick (the old metal kind) within reach to dig at scalp. Cold seems to help. For the longest time I would wake up and get a bag of frozen peas or corn from the freezer to use on the worst places.
I don't know why but I hid all this from hubby. I felt ashamed somehow that I had this unexplained itching. Maybe an unconscious association with lack of hygiene or something. Anyway... It's heaven to vent and be truly heard. Thanks again.
Your little guy's photos are heartbreaking. You did a great job by the way on the pics. I agree with all the posters here and know you want an answer. If it were my baby and I knew about DH I would go gluten free right away and see if a couple of months gives him any relief. He's only 7 months so feeding him is easy to control. I would not use any commercial baby foods. A little of your own soft cooked fruit and veggies for a while would be fine I think. Lots of babies are on just milk for 9-12 months and do fine. I feel so bad for you. I know that, miserable as he is, you are even more so.
Either way, staying on gluten, cutting the steroids and then testing... Or just doing a trial gluten free is at least something you can do. I know you feel helpless. You're not. Be firm with Drs if you are getting no answers.
I will keep your family in my prayers. Please keep us posted and know that you have many, many people here who know a lot and are genuinely caring.
Oh I could cry with relief. This whole Celiac, DH, Hashimoto's thing has me severely doubting my own perceptions. But this particular manifestation has popped up a lot recently.
I have noticed an improvement in the crazy-making itch in the two months I've been gluten-free. For instance, I haven't had the middle of the night thing on stomach or butt or scalp. And I've had a couple of 12-24 hour periods with only minor problems. It seems like the itching is more localized now, on ears, forearms, hands and feet (the worst) and shins, with occasional forests into other spots.
My hands and fingers are most troublesome. Palms are red, fingers wrinked and hot pink sometimes. With little fat to buffer the scratching, this is the area (along with shins) that gets the most scabs and small bleeding places.
I gat freaked out sometimes thinking maybe I have additional problems like kidney failure...I haven't given up my nightly wine.
I can relate to so many of your experiences. But I don't remember reding about the pressure causing new itches.
I have a question. I have noticed that when I'm first getting a new "itchy" that it's on a site that has just had some pressure on it. Like if I use scissors I will get the intense itch right where the handles were pressing on my fingers. To me, this is acting like a hive situation. When I was younger I would sometimes react to a medication with hives and pressing on a spot or absentmindedly scratching would instantly exacerbate or create the welts. I k ow this was histamine related. Anyone ever notice that pressure or a scratch will initiate a DH lesion?
I read the advertisement and my hackles rose. I wouldn't waste my money either.
Skylark, please correct me if I'm wrong, but it isn't like being lactose intolerant, is it? Celiacs have an auto immune problem. The body sees gluten in the intestine as the enemy and attacks it. Wouldn't even well "digested" gluten have to pass into the small intestine and cause the reaction? You always explain things in a way that is easy to understand.
My horrible itching had no rash or even redness until I started scratching. Then it changed and I started getting tiny blisters in some places, but only as the itch was well under way. And even then only in a few places at first, especially hands. It is Dermatitis Herpetiformis. I noticed improvement after 2 weeks gluten free.
Please try a bit longer. If it's from Celiac you will be so glad you did. Also, as is the case with many DH celiacs, I had much less intestinal trouble tan others did. (I have none now!)
Whatever it is, I wish you recovery. You are not a head case. :-)
I have a big grin on my face for you. I was waiting for your post after the Dr. Yes, she dooes sound wonderful. I am sending you best wishes for a terrific trip to Disneyland. Last May, before I was diagnosed, our son, daughter and three little grandkids went to Disney for 5 days. We splurged and stayed on site at the California Grand. The first day of walking hurt my gluten inflamed hips so much I had to be in a wheelchair for the rest of our trip. My hips and knees are still bad but I have almost zero bowel issues after goi g gluten free 2 months ago. (I don't think Probiotics will hurt, can only help.)
Have a great trip and tell us all about it when you get home!
You know when I re-read my post I realized too late that it was unclear. The advice was from Dr and websites, also from some members here. Thanks for the zinc lozenge info.
PricklyPear and Bubba'sMom,
Your advice and info is really appreciated. I guess my big fear was that if I didn't take pills in a perfect way I would be defeating the purpose and maybe even doing harm. I have all my bottles out and am sorting. I just got a terrific pill sorter from Amazon that is a 4 time a day, 7 day case which you can fill and take out one or more days separately to pop in purse or bag. We travel to help with grandkids once a week and spend a nite there, so this particular pill case is just the thing. It's big enough to hold at least 40 good sized supplements a day. I think I'll get another so I can go 2 weeks without sorting.
I appreciate everyone's input. Y'all are so helpful.
If anyone wants to check out the pill holder it's listed on
Amazon as: 7 Day 4 Compartment Pill Organizer DEEP One Inch by Borinhalbich.