DinaB

NJ

Aliperti

I don't know where you are all from but I was hoping to get some suggestions for dining out in Central NJ. Any info is appreciated. Thanks

Kerri

Have you been tested for H-pylori? It is a bacteria that causes gas, bloating, acid reflux. pylori weakens the protective mucous coating of the stomach and duodenum, which allows acid to get through to the sensitive lining beneath. Both the acid and the bacteria irritate the lining and cause a sore, or ulcer.

I am a 36 year old male that has been dealing with "stomach issues" since I was about 14 years old. Over the past 2-3 years, I have been getting progressively worse. I picked up a virus about 3 years ago, and have not been the same since.

My Symptoms:

bloating

flatulence

belching

diarrhea

cramping

I will not have a bowel movement for 3 or 4 days, then usually get really crampy and have diarrhea.

I have been tested for the following:

colitis

Krones Disease

lactose intollerance

gall bladder

Celiac (blood test only)

ulcers

giardia and other parasites

EGD/colonoscopy test showed irritation in both my esophagus and small intestine.

and a few benign polyps were removed.

I did test positive for fructose malabsorption/intollerance, but my score was not off the chart, it was barely above normal.

I also had allergy testing (skin prick) and they found the following as positive allergens:

whole wheat

cultivated oats

rice

fish mix

celery

oranges

buckwheat

strawberry

chocolate

Chicken and rice also showed up on the food patch test!

I do not get any typical allergic reactions when I eat these though. No hives, no anaphalactic reactions, etc.

THey have tried:

Align (probiotice)

xanax (in case nerve related)

aciphex

nexium

Bentyl (am trying now-it has only been a week on it, but I do not feel any better)

The allergist thinks I may have something called eosinophillic esophagitis because sometimes my food gets stuck and I choke.

I have lost over 30 pounds in the last 6 months (and I was not really overweight to begin with), and cannot seem to eat anything. Milk products make me sick, even though lactose and allergy tests were both negative.

Help, please.

The main thing that works for our family at home is to make a larger dinner portion and bring left-overs for lunch the next day. However, if you are not used to cooking then try these:

- Roasted turkey chopped with peppers in a rice wrapper

- Yogurts

- Fruit

- Corn Pasta

- Hormel gluten-free Products (Pepperoni) and cheese with crackers

- Roasted Veggies over Rice

- Chile over a baked potatoe

I hope some of these work for you.

Hi there, I can totally related as we seem to have the same food issues - - and then some. It is very difficult and boring to say the least when it comes to trying to add a little flavor back into your food. I am fortunate enough that my husband loves to cook and has mastered: gluten free, egg free, soy free, casein free, nut free living for me. At first, we too were making separate meals for everyone, but it gets too confusing. I had my 10 yr old daughter tested for Gluten Intolerance as she was complaining of horrible headaches and stomach pains all summer long last year. Turns out she is also Gluten Intolerant. To make a long story short, my husband just wrote a fabulous cookbook, you will be able to find lots of great things to make and eat. The trick is to get creative and use alternative foods. You can visit his blog at: www.flaee.com. You can actually log in to buy the book right now at www.lovingfoodagain.com Although the website is not complete you can still order the book.

Feel free to email me with any questions you have, and good luck!

Hi everyone,

I happen to be gluten, casein, egg, soy, yeast, and corn intorerant. Am I the only one out there with so many intolerances? It seems I make the same meals over and over, which is okay, but my husband has NO intolerances and misses real food. But making two completely different meals at dinner is too much work. Besides it's depressing to watch him eat REAL food while I eat naked meat and veggies. I am riced out...rice milk, rice crackers, cream of rice, rice pasta, rice flour, rice cakes, rice chex, rice chips...oh wait...they contain corn flour!! Can't have that.

My social contacts are limited since we can't go out to dinner with family. Only one restaurant in the area will cater to all my "issues" and then my meal is priced out of sight!

Eating is depressing at times...and a lot of work. I loved to cook before finding out about all my intolerances, now I find myself dreading the thought. I hate feeling like this, but when food isn't appetizing or appealing, who wants it?

Does anyone else have this long list of "can't haves" and how do you cope?

To make matters worse, I can't seem to eliminate my gastro problems even though I avoid all my food enemies...why can't I get my insides under control?

I am so sorry that you are not feeling well. I have a question about the Bella Donna Pills that you said that you take. Are they natural and do they help?

I hope that you feel better soon.

Thanks all. I am confused about sushi...I thought it was rice, rice vinegar, and basic ingredients. I knew that wheat was in imitation crab and never had a problem there before. The Bella Donna pills are prescription (generic for Donatal). I can't take Donatal because it has Lactose, but they do seem help a bit once the pain kicks in.

Hi there. On Friday, my hubby and I decided to go for Suhsi. We haven't had it in a while and was in the mood for it. Usually when I go, I get the California Rolls with REAL crab and I am fine. Well, that is what we ordered and I ate a double order as well. I came back to work and about two hours later I was running to the ladies room. The pain was horrible, and I was told later that day that they substitute Snow Crab, which has pink in it. My husband told me not to eat it, but I didn't listen and trusted the waitress. Well I am still in horrible pain and living on Bella Donna Pills. Every time I eat I get pain like someone is twisting my intestines out of my body. I suffered throught the nasuea, the gas, the bloating, etc. The pain has ever lasted this long. I am not trying to put a time frame on the pain, but just want to know if Snow Crab contains wheat. I haven't been able to find anything on-line that will give me definitive info.

Thanks all. (UGH)!

Hi there,

I have similar issues with egg, soy, etc. However, shortly after I got my tattoo I became extremely sensative to fragrance and dyes, ink, newspaper print and other chemicals. You may to reconsider.

Dina

Dapsone isn't just for DH. I think it was originally used for leprosy and has been helpful for some symptoms of AIDS.

BTW, I've never heard of the ointment. I always just took the pills.

richard

Yes, it's rather new. And you are correct about leprosy as well.

I'm using Fluocinonide .05%, but I'll inquire about the Dapsone cream when I see my Dermatologist in 5 weeks.. Your Pharmacist should be able to answer the Gluten question... One should start a Patient Profile @ their Pharmacy..

My Pharmacy is useless and I cannot trust them. They told me twice that something was Lactose Free/Gluten Free and I got sick and wound up with welts on my scalp. I asked them to flag my profile, but still they cannot be trusted. After more research this afternoon, I realized that the ointment is an antibiotic, which is why my stomach is upset with bad D.

I don't have an answer to your question but I do have another question for you:

Was he thinking your blisters were caused by herpes virus (therefore the Valtrex) and then Staph (therefore the use of Bactroban)?

Yes. Was on Valtrex for 3 weeks and the breakouts were still happening. Then he put me on Bactroban and made it a little worse. Just started Dapsone last night. My belly has been killing me all day and bad D.

Hello,

My dermatologist finally gave me Dapsone topical ointment yesterday, after trying Valtrex and Bactroban. Had anyone had any experience with the ointment? I could tell it worked pretty well already, but belly has been real bad so I am confused about ingredients. Something that is for DH couldn't have Gluten, right?

Even with all those negative tests you could still be celiac. I am firmly diagnosed and I don't carry either one of those 2 genes either, I carry a celiac related gene but it is not recognized here as one. Unless of course it is one of the other 7 that the US has newly acknowledged. It doesn't really matter whether you call yourself celiac or gluten intolerant anyway IMHO. The discription of your blisters does sound like DH. The afore mentioned biopsy is the way to find out for sure. A diagnosis of DH is a diagnosis of celiac even if there is no gut symptoms whatsoever.

Thanks! I appreciate the information. I just hate when I finally figure something out and then something else goes haywire. I will make an appt with the dermatologist again!

Why do you think your "only" GI? There are those that think GI is just a precursor to the damaged intestine of celiac disease. If you have DH, you do have celiac disease. You are right that the meds aren't going to help DH. I'm lucky, I don't get the lesions on my face but I do get them, my razor got me too!

I have been tested through blood/biposy/gene and all are negative. I tested through enterolab and definitely positive for gluten interolance. I knew this way before I even tested.

I had a skin prick test. The doctor used a needle to scratch the surface of my skin for each thing she was testing for. It is not a painful experience at all! It sounds much worse than it is.

You may find that having blood work done to be more reliable. My allergies aren't inhaled, they happen upon digestion. Nothing...absolutely nothing will show up on a scratch test for me, but when they test through my blood it is truly amazing what shows up. I've used direct labs and they have been the most accurate for three years now. You can find them at Open Original Shared Link. Of course you have to pay for the test yourself, but you bring it to a lab, follow the instructions and in two weeks you will have a color print out of approcimately 96 foods groups. I made a list of things I thought were causing my eczema before I sent it in, just to see how accurate it would be, and it was spot on. No other tests have come close. If you saw my first test you would think I was allergic to everything. Once you eliminate these foods, and retest again after one year or so, you will be left with what seems to be my regulars.

It worth it because I can't begin to put into words how much it helped me. Once I eliminated those foods the itching and eczema stopped. It brough such relief. I have also done Rast testing and Alisa testing and neither of these come close. I am not bashing those other companies, they are both good, just not as good and much cheaper.

Sounds very much like DH to me....my husband is dealing with the same thing. My understanding is that if you have DH, you have celiac disease, not NCGI.

Here is a quote from the National Institutes of Health website on celiac disease (Open Original Shared Link)

Biopsies of the proximal small bowel are indicated in individuals with a positive celiac disease antibody test, except those with biopsy-proven dermatitis herpetiformis.

Which seems to imply that a diagnosis of DH is equivalent to a diagnosis of celiac disease.

And here is an article by Dr. Russell Hall which discusses the connection between DH and celiac disease:

Open Original Shared Link

I agree with the previous posters that you should see a dermatologist and ask to have the skin next to the blisters biopsied. Not the blisters themselves....but the derm should know that. My husband has taken Dapsone which helped a lot, but he didn't like the side effects so has stopped taking it.

Good luck!! I hope you feel better soon!

JoAnn

Thank you everyone! I really do appreciate the feed back. The problems is I do not have Celiac disease, but rather VERY intolerant to Gluten. After doing some extensive research this morning, and I am probably wrong, but it said that Celiac's get the lesions in the intestine's and that Gluetn Intolerant people get the lesion under the skin (it did say that Celiac's also get in under the skin). I guess my misunderstanding is that I am Gluten Intolerant and didn't think I could get DH...am I wrong? Very confused.

All of the products I use are completely free of gluten/fragrance/soy/nuts/egg, etc...from makeup to shampoo. My medications/creams, etc...even the darn strip on my razor was getting me. My only glutenings come from accidental ingestion while away from home or eating out. I do notice vinegar always gets me.

I used to get DH on my face and once had a terrible outbreak on my lips. I ended up getting a blister on my knee biopsied for confirmation much later. If yours is DH, you can get outbreaks from iodized salt and ibuprofin products (like advil). I gave up both of those, along with most processed corn, like high fructose corn syrup, and my DH has been gone for awhile. My sister and niece both got cold sores on their lips from gluten before being diagnosed with celiac. Now on the gluten free diet, they don't get them anymore. My sister does react to vinegar too. You may want to try a food diary and see if you can connect the outbreaks with anything in particular. Good luck, I know it's not fun!

Dee in NC

Thanks for the info. It's funny that you mention Vinegar, because that is what I ingested by accident last week right before the breakout. Yesterday's glutening was from a toaster, so it wasn't too bad. I do notice that a liquid glutening is much worse for me than a dry one, if that makes any sense. Both give me horrible symptoms, but the eczema and blisters appear after a liquid glutening. I was just wondering if anyone had tried Bactroban, and if maybe it isn't truly bacterial.

Hello everyone,

I am having some difficulties trying to wrap my arms around what is going on with me. Occasionally, right after being glutened, I experience a breakout of blisters which are located sometimes inside my mouth, but mainly outside and on my chin. When they break open they spread like crazy. Originally the doc said it was fever blisters/bacterial and gave me Bactroban (sp?). I've using that twice a day along with Valtrex and have been on it for almost three weeks...everything seems to be going away, but not 100%. Yesterday, I was glutened by accident and within a few hours had another new blister on my lip. I am confused and have been reading so much on DH, and didn't think that if I was Gluten Intolerant I could get blisters. Also, depending on how much and what was ingested I've gotten severe itching on my elbows as well. This is all new to me, as this is my third breakout since April, and I am not having fun with it. The doc said I shouldn't experience any new breakouts while on Valtrex, but I am thinking it's not fever blisters, but they do resemble each other.

Any advice would be greatly appreciated.

I feel your pain as it took me a long time to figure it out as well. Once I eliminated gluten, egg, soy and dairy, I couldn't figure out why I was still having eczema and symptoms. Within the past month, my husband and I called almost ever cosmetic company and the products companies I know order my makeup from are: Tag Makeup, Monavi (sp?) and After Glow. However, I did finally find a mascara that is gluten free/soy free by Estee Lauder. I always wondered why my eye lids itched and I had red lines on my eye balls all of the time. Since I started using these products I have been fine. I also just received a 5 page letter from Mary Kary (after my husband got into with them) which lists their allergens. It is a great source of information and is broken out by Nuts/seed, Soy, Gluten. I tried to post it, but it's a PDF and not sure how to do it.

It would be interesting to know if the vitamin D plays a role for you. I hope you will post back to this thread. Good luck!

I'm curious as to what kind you take. Since I have other allergies, it has to be free of Milk, Gluten, Egg, Soy, etc. I haven't had much luck finding vitamins at all. Lots of hidden ingredients.

Shortly after I went gluten-free, the allergist told me I was allergic to formaldehyde and phenols (ie fragrances.)

For what it is worth - In the last 6 months I started having more and more problems with fragrances, that is, the allergies seemed to be getting worse.

In the last month, I have become much less sensitive. I've only made 2 changes - more vitamin D (I had tested as a bit low) and taking probiotics.

hope this helps.

That is interesting about the Vitamin D. I will have to try that. However, I am allergic to yogurt and all probiotics. I tested against all of those chemicals and nothing came up. All of it is mostly inhaled.

So, no gluten, no soy, no corn, no caffeine, no nightshades, no lactose, no GI symptoms; but what I do have now is a blotchy, raised, a little bit scaly (dry), itchy rash on neck and arms x several days; unresponsive to psoriasis creams, hydrocortisone, moisturizers. I think it must be a food reaction. Anybody had a similar reaction?? to citrus perhaps?? The only thing different in my diet has been an increased consumption of citrus (because it's that time of year here). I will eliminate that, but any other ideas?

I seem to get hit with occasional bouts of different intolerance issues. Most recently, if I am in a room or pass by Strawberries in the supermarket I get a rash on my legs and arms. To me, this is the strangest thing ever. Strawberries have never come up on any of my allergy tests. My GI pulled me off all fruit in December due to constant bloating/gas, etc. I stick to it very closely because it seemed my symptoms have disappeared. I don't know if I can get used to an inhaled allergy...kind of like fragrance, which I am also super sensitive to, but Strawberries??? I too can't have most of those things. I live on meat, fish, poulty, pork, only a few veggies, cause most have high fructose content or too gassy. How many more things can we eliminate from our diets? Try keeping a food diary to track your reactions. That is how my GI dicovered it was fruit. Good luck!

I can relate a lot, especially to:

I'm going through this atm and have gone through it many times. It sucks so bad. For me, I always start thinking I am developing some other food intolerances and then nope, later on I usually find out there was gluten in something. Usually something that shouldn't have gluten in it at all. So annoying.

I really feel for you on the fragrance thing. You couldn't be around me, I love perfume. That must be really hard.

The fragrance thing came out of no where. I LOVE perfume! I love my hair to smell pretty, I love my clothes to be soft and smell nice. Everything we use smells like nothing. It is so sad and I hope it doesn't last long. I guess we all have our issues to deal with, but the one thing I appreciate is being able to log on here and see that I AM normal and there are plenty of people out there with my same issues.

Be well.