Just Had Biopsy- Covered In Hd And Scared

[CrazyforCandles]

Four months ago my arms broke out in a horrific rash that my GP treated as Contact Dermititis to my hair dye. Well, four months later I was seriously tired of this itchy rash that now covers my entire body, except my head. I demanded a blood test and saw a Dermatologist. He did a biopsy yesterday. Since then, I've been looking/ learning online about Celiac and am 99% sure my result will confirm that. I was lactose intolerant my younger years, trouble with going to the bathroom my whole adult life, took 8 years to conceive my son, anemic for as long as I can remember, and now this crazy itchy rash and headaches... No one in my family has been "diagnosed" with this disease yet my father died last year from Gall Bladder Cancer and suffered with IBS and stomach/thyroid problems for years, my Aunt (his sister) had 6 inches removed from her intestines from a blockage and suffers from stomach problems as well. To say that I am scared is an understatement.

I started going Gluten Free yesterday but now reading labels....it's in EVERYTHING. Visited a health food store only to find Rice pasta for $5.99 for a small bag! I cannot afford this- apparently I will be eating nothing but fruit, veggies, and meat! I will take any advice on where to shop, best books to read, or info from all of you on what I should do now.

Also... does anyone know how to get rid of this Herpitiforus Dermititis rash faster? Can I use cleansing teas or products to get the gluten out faster? Is there a safe way to detox? I can't imagine what my intestines look like if my skin is this broke out

- Gonna be up all night worrying about it.

[Skylark]

Don't worry. The diet takes some getting used to, but you'll feel SO much better!

We do eat a lot of meat, fruit, nuts, legumes, and veggies. But there's also rice, potatoes, quinoa, amaranth, millet, and other gluten-free grains. You can get starch mixes with a little xanthan gum that are fine for baking and make just about anything you miss. It's best to go light on dairy first too, but once you're healed many celiacs tolerate cheese, yogurt, and other dairy products. You'll realize there is plenty to eat if you shop the "outside" of the grocery store with the dairy, meat, and produce sections.

Start reading at celiac.com. There are food list links right on the first page. Clean out your kitchen, and get fresh jars of mayo, butter, peanut butter, and anything that might have crumbs in it. Keep them separate for your own use. Get a fresh cutting board that is never used for gluten foods, and a fresh colander if you cook pasta because they're almost impossible to clean. If you have one of those vertical toasters, you'll want a new one. You can usually clean out a toaster oven and make sure the rack where bread goes is clean.

I buy rice pasta at Trader Joe's, where it's $1.99 for a 1-lb bag. I usually have Dove chocolate or ice cream if I want a dessert, although sometimes I get a Betty Crocker gluten-free mix. Bread is expensive so I mostly go without, or make cornbread to have with soups and stews. Sometimes I get a loaf of Udi's, which is really good but it's more of a treat than a staple.

Plan on cooking a fair amount, and carry things like Larabars or Kind bars for emergency snacks. Depending on where you live, there may be a gluten-free restaurant list on the web. Many celiac support groups have them.

I don't get DH but my understanding is that there is a medicine called Dapsone that helps. I know nothing about side effects of it or whether it is hard to take. As far as detox, the best thing is to simply go 100% gluten-free as fast as you can. Eat mostly whole foods that you can look at and tell are gluten-free, like an apple, a potato, or a salad until you get better at reading labels and learn what your body needs. Make sure your Dr. has checked your D, B12, and iron and supplement whatever you need. Most of us benefit from some D and a good B complex vitamin.

Hope this helps and I'm sure others will have lots of other ideas and suggestions.

[mushroom]

Skylark has given you good advice. To help the DH disappear, avoid iodine, such as in iodized salt and in any vitamin supplements, kelp, etc. Do a google for things that contain iodine as it aggravates the DH. I have heard others complain of the side effects of Dapsone, and others think it helped them a lot so its a decision you will have to make whether to ask your doctor for a prescription. It appears to be the only medication specific for DH. There is a DH forum here so you may want to do some reading there.

In your eating, don't forget nuts and seeds, peanut and almond butter (spread on rice cakes is good), also I love the apple and cinnamon rice cakes just on their own. Eat plenty of the good fats like olive oil and avocadoes and coconut oil is good for baking if you can't use butter. There are plenlty of good tasting foods out there that you can incorporate into your diet - you just have to be a little more creative

[GFinDC]

Yep, start with learning to cook if you are not a cook already. I used to make a big pot of rice and veggies every weekend, with various veggies and meats. Then freeze most of it in smaller portions. Make another version/flavor each weekend and you can have a nice variety after a while.

I suggest you consider avoiding all sauces and salad dressings to start also. Unless you want to spend hours researching them online. Vitamins and meds can contain gluten also. You need to avoid wheat, rye and barley, and some of us react to oats also. There are lists of bad indgredients on the main site. Spice blends might be a problem so it is safer to stick with single spices rather than mixes.

A few things that I do ok with are: GFCFSFNF list (gluten free, casein free, soy free, nightshade free))

Trader Joe's brown rice tortillas.

Bakery on Main Granola

Food Should Taste Good gluten-free chips

Planters peanuts, but check ingredients

Organic or natural peanut butters.

Hellman's canola oil Cholesterol free mayo.

Larabars

You might like to try quinoa or teff or amaranth as grain/rice subs.

Basically start simple and build up a list of foods you can eat.

I don't have DH but I think the diet advice is ok anyway.

Welcome to the group and Happy Holidays!

:D

[cahill]

These guys give the BEST advice

The first suggestion I would make is:: Sit down and take a very deep breath and know that although the road may be very bumpy you are not alone ,,much love and many hugs

[shopgirl]

Also: if you don't cook your meals for the week ahead of time, at least plan out what you're going to have. I write it on a dry erase board on the refrigerator every Sunday so I'm not mopey and procrastinaty when dinner time rolls around.

[CrazyforCandles]

I woke up this morning and saw all of your posts and cried. Thank you so much for responding. I live in a household with two active, slim children and a hungry husband who I swear eat more 'gluten' products than anything and was not having such a positive response with the idea of no more waffles, pancakes, bread, etc in our home. We do eat a ton of fresh veggies, fruits, nuts, and meat too so I will get some books from the library to see what new meals I can come up with for xmas dinner lol

It's amazing to realize that even BREADCRUMBS and things in the smallest amount are so harmful that I would have to have my own jars of condiments and toaster so that I don't cross contaminate!!!! (never researched this before)

Unfortunetly, I live in a small town that offers only 1 high priced all natural store but I will eat ONLY gluten free easy foods until I hit a Whole Foods or Trader Joe's next week. They are both over an hour away. I do love to cook and am willing to experiment.....and learn how to bake lol.

Thank you sooo much for your kind words. I felt very alone until seeing this group online.

***I do have cleansing teas at home already and if anyone knows if this is ok to help rid my digestive track of the funk then please let me know.

**** My Dermatoligist doesn't want to start the Dapsone until 2 weeks of a Gluten Free Diet So it looks like I'm stuck with this rash. He did give me a topical Topicort to help with the discomfort tho.

[Skylark]

Let's see. For Thanksgiving Mom and I made turkey with cornbread stuffing, mashed potatoes, gravy thickened with cornstarch, cranberry salad, baked apples, steamed broccoli, and crustless pumpkin pie for dessert. (We only care about the filling anyway. )

Cleansing teas are fine to drink, as long as you check them for gluten ingredients. Barley or malt is usually the issue in tea and it only shows up in a few herbal blends. I don't know that they will help you one way or the other but they can't hurt as long as they're safe herbs.

[rosetapper23]

When you go to Whole Foods, check out two great gluten-free breads: Whole Foods Prairie Bread and Udi's sandwich breads (whole grain or white). Both can be found in a freezer compartment. You can also find gluten-free waffles, muffins, pizza crusts, beer, etc., there. I've found that Trader Joe's offers fewer gluten-free products every month. They used to have great gluten-free desserts and the best waffles, but now they carry next to nothing that I can eat. A lot of their products simply say, "Contains no gluten ingredients." This tells me nothing about possible contamination, so I refuse to buy those products.

After a while, you'll see how easy it is to cook and bake gluten free, since we can eat a LOT more things than we can't. Your family will adjust, and you will eventually stop craving gluten. I no longer have any interest in gluten and don't fantasize about eating croissants or donuts anymore. I can find great gluten-free pizza at local restaurants, bread at Whole Foods and Mariposa Bakery, and life is good. Eating gluten free only becomes a problem for me when eating at other people's homes or at potlucks. I still feel like crying sometimes at parties, but this is all part of the grieving process. I've been gluten free for seven years, and it's a lot easier now.

[lovegrov]

For right now all you need to avoid is gluten so focus on that. As far as shopping and cooking for yourself, it's really not so hard these days. Wheat MUST be listed on commercial food items. Barley is rarely hidden and is often listed as malt. Rye and oats are never hidden in food. Somebody advised you to avoid sauces and salad dressing but this isn't really necessary, because, as I said, things are really pretty clearly listed. In addition, any Kraft sauces or dressings will clearly list ANY gluten and you can call other companies. Settle on a few you might want to eat and check those out.

As for DH, if that's what it turns out you have, it could start disappearing almost immediately, as it did with me, or it could take more than a year. Dapsone is the ONLY thing that will provide real relief. Yes, some people react to it, but the reactions are easy to monitor and reversible. You don't suffer horrible liver damage from taking a few pills. I took dapsone for more than 20 years with no known side effects of any sort except that my doctor had to lower my dosage after the first week.

richard

[drgoogle]

I feel like I'm in the same boat as you (waiting on biopsy results, 4 months into the rash), but have been gluten free for almost 2 months now (started suspecting gluten a while ago although I just became super strict in the last week) so just to provide some words of encouragement, it certainly gets easier! I do have some previous experience with experimenting with nutrition and diet for completely different reasons (athletic endeavours), so maybe that helped me make the transition more easily, but I had been eating freely for a while, so it was still an adjustment. Any cravings for foods that contain gluten or dairy are completely gone now and I've noticed further improvement above and beyond the initial improvement now that I've gone really strict. My family and friends have been very understanding (compared to when I previously had self-imposed dietary restrictions as opposed to a health concern - at that time they were certainly not accommodating or understanding but rather closed-minded and judgmental!) It's kinda ironic. But, back to the positive - my mother-in-law just baked the most delicious lemon muffins and lemon cake for my birthday, completely gluten and dairy free. A friend of mine who often does gluten and dairy free baking for her own interest has been a great supplier for treats for me to satisfy the odd craving too I don't particularly enjoy baking, but I do cook and have found that Thai is my new best friend. Of course you still have to be careful and make some substitutions but for the most part it's much easier to have delicious satisfying Thai food that's gluten-free than say, Italian or French! Once it's been a while and I'm healed up, I'm going to have more fun with sushi too (limiting it now to avoid iodine). Glad to have an "e-friend" in this journey

[CrazyforCandles]

Dear DrGoogle- Yay more rash friends lol. I have been Gluten Free since last Friday after I had my biopsies and my rash IS healing. It is a very difficult adjustment to not grab a PB&J for lunch or a quick sandwich for dinner when life is so hectic....def have to plan my meals out. Many of my other symptoms like IBS are disappearing and crazy enough...I'm sleeping. Something that has never been easy for me. So the benefits outweigh the negatives right now for sure. Trying to AVOID shellfish until this rash is gone myself....but I cannot wait to do an AYCE Crab legs night

[GFinDC]

Dear DrGoogle- It is a very difficult adjustment to not grab a PB&J for lunch or a quick sandwich for dinner when life is so hectic....

...

Just a quick idea, grab yourself a carton of Larabars. That way you have a nice gluten-free snack to eat and don't have to feel deprived. Apples, and bananas and other fruits are easy to pack along snacks too.