It's so refreshing and reassuring to find yet another physician so poorly informed about Celiac Disease, NCGS, and the spectrum of autoimmune inflammatory diseases that can be helped by eating gluten-free.
Especially interesting coming from a cardiologist. You'd think he'd read some research on heart disease, inflammation, and the effects of diet on inflammation.
If you want thin-mints...try an almond or coconut based one. I *think* Elana's pantry has a recipe. I've been too chicken to try (I have mint flavoring issues) but I may since I've had luck recently with an organic mint extract.
Pardon my last post. I meant Terrific as a response to Blaze's saying he was going with Silk Almond milk -- no carrageenan.
Abby! Good for you!
Mendylou, I really feel for you @ 3yrs. ((((HUGS))))
Okay. Blaze, now I know you must be a southerner!!!!!! Blackeyed peas for New Years --- you just gotta be from the south or your wife is. I'm in Fl. but mom was from Bama.
I did low iodine, gluten-free, & low sal for 9 long months. It's a total bitch! No other way to put it. Let's see if I can remember my allowed foods for 9 interminable months:
Celery (still haven't wanted to get near the stuff since I don't HAVE to eat it now), deeply peeled potatoes, sweet potatoes, iceberg lettuce, chicken, beef, pork, egg whites, rice, saffron, cashew butter, instant decaf coffee, leeks, apples, green beans till they came out my ears, snow peas, sugar snap peas, cauliflower, zuchinni, yellow squash, white acre peas, black eyed peas, field peas, lemon, cashews, bananas. The end. That's it. That's all. Breakfast, lunch & dinner, 7 days a week, for nine months. Then we said screw the low sal thing & absolutely nothing happened that made our rash worse for eating sals. We were the same as if we had been low sal. But OH!!!!! we could eat SOOOOOOO many more things! It was as if an entire world opened up for us!!!!!! Food, glorious FOOD!!!!!
Blaze, is the Dapsone working for you? How much are you taking per day? And have you noticed a difference? Tell us please what is going on with your rash at this point & how that differs from when you first came on this board?
Another day of no itching for both hubs & I. I'm running my hands over my skin & it feels so soft & smooth & I haven't felt it like this for what seems like forever. Only my lower legs still have rough patches which are rapidly healing. After having itching somewhere on my body continually since 2010; to not itch is a bit odd feeling but it is exhilarating!!!!!!!!
Clear, painless skin is exhilarating. It's amazing how it just disappears.
Same here as Prickly only my problem with iodine lasted longer than Prickly's experience. I had to go low iodine for literally well over a year. I would keep testing it along the way & had to keep backing off of it. But since Sept., have been eating it to my heart's content & have no problems. I have not yet added back seafood or iodized salt but everything else is back on the table.
And I am very happy to say that 2 years & 1 month strict gluten-free; I have not itched in 4 or 5 days now & all my places are healing rapidly & no new ones have appeared. YAY!
I am a newbie to the gluten-free diet. (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.
I was diagnosed with DH in 2010.
I too, am skeptical whether I truly am suffering from DH.
My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues. Ouch!
The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.
A biopsy was done and lots of blood work every couple of months for over a year.
Steriod creams intensified the burning rashes.
I tried one Rx, which did not help at all. I can't recall the name of it right now.
After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.
That dose worked like a dream for me! It controlled all break-outs.
Intense stress did cause flare-ups while on the Rx.
If I forgot the take a dose, I would experience symptoms by the end of the day.
My Derm. was always worried about lethargy and neuropathy, which I never suffered from.
My iron level was low, but not dangerously low for a woman of my age.
The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.
As soon as I began taking Dapsone, my O2 was 90-92.
Prior to taking Dapsone, I have no idea what my O2 level was.
My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.
A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.
I have no asthma or breathing difficulties at all.
So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet.
After reading posts on this forum, I see that I have a long road ahead of me.
This moring, I woke up with horrendous burning rashes in all of the areas described above.
My only hope in this miserable lifestyle change is that I truly am symptom free one day.
Any and all scientific findings, support or advice are welcome!
Well, it seems you doubt your dx.
If you've been eating gluten for three years while on dapsone you could go in for Celiac antibody testing. You could also try a dh punch biopsy, if you haven't been on steroids. I have no idea if dapsone affects biopsy results...you'd have to ask your derm.
One week off gluten probably won't change things, but I probably wouldn't go past two weeks and try antibody testing. Be warned, many dh sufferers test falsely negative in both antibody and biopsy...so, be prepared to trial gluten-free to see what happens. But if it comes up +, maybe that will help settle the dx in your mind.
My personal opinion is that any negatives or inconveniences of the gluten-free diet are negated by the threat of that damn rash....so, given the alternative I'll stay gluten-free.
Ice packs, mild moisturizers (I like VaniCream), clean gluten-free eating...it'll get you started. I'd try low iodine (which does suck, I agree) to see if it helps. Sure helped me, and I was thankful at the time.
Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH. She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".
He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy. He said he was SURE this was DH.
Does this sound like good advice?
I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day. Yesterday was first 100% gluten-free day. How long before the dh will improve?
HELP ME PLEASE!!! )
NO!!! The biopsy needs to done while she's eating gluten (now), and when she isn't on steroid creams/oral med (if she is...). The biopsy is a punch biopsy taken next to a lesion. It is dyed and the lab tech looks for an iga pattern - iga is the antibody celiacs produce in response to gluten. So gluten is necessary for an accurate biopsy and accurate bloodwork.
That said, you can try testing now and if + you have your answer. If -, consider a gluten challenge and retest (misery for dh sufferers).
There are meds that can be used to reduce dh eruptions, but I don't know if a young child can safely use them.
Most dh sufferers are quite sensitive to gluten - so the smallest bit could keep it active. Others have dh that is reactive to iodine - like water on a grease fire (gluten being the grease). So, some of us need to follow a low iodine diet for a while.
I think there's a basics thread on dh in the dh forum? There's definitely a newbie forum for celiac on here.
I apologize for being slow getting back here. I was glutened with the Rice Dream Rice Milk and had a couple of couch days.
I truly appreciate all of the valuable info.
I am eating chicken with the rice. Probably not enough. I am going to look into getting something for the adrenals at the health food store today. Hopefully my body can tolerate it. I do know it is time to expand my diet. 6 months ago I had no problem with the SCD diet. that was before I lost 25 pounds in 2 months and got so weak. I am definitely looking into getting back into some of it.
My biggest concern has been getting my weight back. All the info I found on the web was for a high carb diet. I am now up to 115 form 102 so it is not so pressing. Also, I thought I had IBS and was on the IBS diet to stabalize the diarriah. I had no clue the diarriah was caused by the celiac as I thought I was gluten free. GRRRRRRHHHHH! The IBS diet is quite high in carbs.
I still have concern with the Hypoglycemia diet to get enough calories. I have to push now with the rice/carbs etc to get 2000 calories per day. How do you get the calories?
I am going to start introducing more foods to my body. Hopefully I will be able to add some eggs and nuts. This celiac business is like wading through a mine field.
Do you think it is too early to introduce yogurt and kefir into my diet?
Being able to connect with such splendid and caring people here in the forum is saving my life. I have value for each and every one of you here in this community.
I'd concentrate, in the beginning, on adding healthy fats. Nuts sound good. Eggs? I did well on leafy greens and veggies, but that's an issue for you. What about fattier cuts of meat? It isn't all about carbs...and adding carbs without protein or fat will probably make your glucose swing (which sucks).
Only you can decide if kefir is ok. Try it slowly and make sure it's the only thing you add...if you react you'll know that's it.
Contrary to what seems to be perceived, there isn't a "Celiac Club Card".
You don't have to give a medical history to everyone you meet, or even prove it to doctors.
Also, you can get all of the nutrient and other autoimmune tests run regardless of knowing you are Celiac.
You can test your genes, as mentioned above, to see if they add to the case.
If you go into the hospital and write "celiac" on your paperwork, no one will argue with you.
You can do all the things a conscientious celiac would do, from today forward. Nutrient tests, etc. you can even monitor antibodies (which some celiacs do, and some find it pointless).
Find a doctor who believes in you, and you trust. You are without a doubt gluten intolerant. I don't see anyone arguing with you about that.
As far as pregnancy, etc. recent research is showing untreated autoimmune disease and inflammation can be problematic. So, figure out your inflammation levels, vitamin levels, secondary ai disease if any. You manage symptoms and issues not a diagnosis title.
So, testing is your option. Just be aware you may may through that misery to come up -. Perhaps because antibodies and damage didn't have enough time to build, or the testing maybe incomplete/incorrect. Some people gave much worse symptoms going back on gluten.
Well, lots of chefs will agree that the non-choice (not prime) cuts if meat are sometimes the tastiest. Generally, bony/fatty cuts are great in stews, pots of beans, etc. nowadays, the problem is finding those cuts...since most stores sell boneless, choice cuts. Shop the coupon flyers for deals. Some butchers let soup bones go pretty cheap or free when you buy other cuts. Costco sometimes has the best price around on large packs of meat.
Beans and peas are excellent protein choices - dry bags of those are super cheap.
Eggs are protein. Lots of quiche, torta recipes out there.
I think it's easier to cook a roast or large cut of meat on the grill or crock pot, then use it twice (leftovers) in a week. I make soups/stews and freeze half in single serving bags.
Quite frankly, cooking gluten-free on a budget is easy if you stay away from processed gluten-free foods. Plenty of mainstream junk foods are gluten-free - tostitos, etc. Hershey's kisses, M&M's. I do admit a recent addiction to Jules gluten-free flour blend. I can make my "old gluteny" baked goods/sweets recipes easily with it. The pain is in the shipping when ordering from her, so bulk is best.
If you like the idea of prepping everything one weekend and putting up freezer meals, I'm sure it's doable by modifying ingredients gluten-free.
My son (11), who is not celiac (but may be one day) and may be ncgi, went with me to a gluten-free restaurant.
He was totally psyched that he could eat anything in there and it was gluten-free and safe. What he REALLY liked, that I had no clue was an issue is that he could SHARE with me - that he wouldn't contaminate me or my food.
Tonight, we went to another restaurant that serves excellent gluten-free pizza as well as gluten pizza...and he ordered gluten-free so he could, in his words, "touch you without glutening you - I don't have to wash my hands".
So, it or may not be the diet. It may be the lifestyle or some other factor he can't express. Anyway, talking to other gluten-free teens may help. Being somewhere "safe" may help.
Squirmy is right, you can't rush healing. But you can screw it up - stay out of the bleach.
Look, I know how desperate and adrift you feel. We all do. We've been there. But the best advice is to keep it simple.
I ignored sage advice and tried too many things at once...and that was bad because a body under stress can only handle so much - even a good thing.
Eat whole, simple foods. Concentrate on deglutening your house and building a repertoire of safe foods and brands you like and tolerate. Keep a food diary. Check every supplement and body care and pet item for gluten. Clean the kitchen - get the gluten out if the kitchen drawers, pans, utensils. Clean the dishwasher.
If you haven't had vitamin tests to discover deficiencies, do those. If you take vitamins/supplements I suggest liquids and powders dissolved in liquids. Celiacs have crappy absorption in the beginning. Probiotics help most, as do digestive enzymes at meals. Discover the common sense, tried and tested that works for you. Then move to the next phase.
If you want a healing diet look into GAPS or somesuch. For many, a pieced together healing diet (best ideas in food form we can tolerate) from several healing diets work.
There's no one way to do this. I'm sorry, but it's true. We've all had very unique journeys.
From what I've read about activated charcoal it binds everything...which is why some people use it after a glutening to relieve symptoms. I doubt it's a good idea to take it on a regular basis if you already have nutrient absorption issues.
I understand you're trying to relieve distress, but from what I've read, charcoal probably isn't a long term solution.