Might Have Dh, Need Advice

[BubblesandBunnies]

Hi,

I am new to this forum, but wish to say hello first.

Ok, so I don't know if other people are in or have been in a similar situation as me, but hopefully some have or know someone who has, and can give me advice on how to proceed.

..Here's the story: For the last 10 years I have been suffering with intense(and by this I mean severe, pretty much every person I know completely under estimates just how bad the itching gets, even when I say it is horrible beyond horrible)

As of about 6 or 7 months ago though rashes (which I might add are at least 2 to 3 times as itchy as the rest of my skin) have appeared(first it was 1 on my stomach, and now there are many covering almost all of my butt and inner and outer thighs) have appeared.

Last month webmd launched their interactive symptom checker, and of the 3 possible suggestions for diagnosis it arrived at for me, DH had more than double the amount of related symptoms, and the description pretty accurately described what I was experiencing (at least where the rashes are concerned)

Ok, so I have been to see my doctor many times about this, she ordered blood tests (which according to her were to test for liver disorders) but I have no idea if she tested for DH or anything. Regardless of that she found no problems, and tried referring me to a dermatologist.

Here in lies my first issue. I am disabled and my only insurance comes from Medicaid, but I cannot find any dermatologists where I live that accept medicaid(save for 1, but I am reluctant to go to that one as I have had significant problems with that particular Doctor not doing his job{I assume this is due to not caring as much about patients who only have government insurance).

So, I don't know what to do about this. I don't have cash to just pay a dermatologist outright, and cannot seem to find a credible one that accepts my insurance.

Next issue, is in lieu of an actual diagnosis, I would like to try a gluten free diet non the less (as all my research about DH seems to correlate to my symptoms considerably more than any other diagnosis I have ever read or heard about).

That said, I have been told that a gluten free diet is not cheap ....I don't have the appropriate amount of funds to just go willy nilly shopping at health food or specialty shops, nor do I have access to farmers markets etc where I live. Infact most of my food due to budget constraints has to come from walmart or the local Food4Less.

Anyone have experience living a gluten free life style, while being on an extremely low budget?

(too long didn't read version): I can't find a dermatologist in my area that accepts my insurance, Any suggestions?

and: I have an extremely low budget, any advice on living gluten free as a low income individual?

Thank you to any and all who respond.

-Bubbles&Bunnies

[pricklypear1971]

Well, as far as testing goes ...there are a few contradictions to testing that you need to know before you even try.

1) eating a gluten-free diet

2) steroid use of any type

So, let's assume you're eating gluten and they haven't given you steroids for anything in the last 6 months or so....

Dh Celiacs rest better on a few celiac blood tests than others. Specifically the TTG IGA, so if you persuade a doctor to run Celiac blood work make sure you get that one. Open Original Shared Link

A complete list of recommended test can be found here Open Original Shared Link

If you want to go gluten-free without testing or dx you certainly can. You don't need a prescription or permission.

Since you think the rash is dh and you are on a strict budget you should be aware that most dh sufferers have a secondary intolerance to gluten. Sometimes it's iodine, sometimes it's salicylates. Sometimes they have other food intolerances like corn, soy, or milk. Essentially anything that irritates you -scents, a particular food can set it off, especially in the beginning. So don't tempt fate and play it safe. So, if you want to maximize your diet up front I'd take these things into consideration and steer clear of the worst of them (especially iodine and high salicylates).

You can find information about low iodine diets here Open Original Shared Link . You can find info about salicylates here Open Original Shared Link

So, gluten-free on a budget. Eat fresh food: meats, fruits, veggies. Eat beans, peas - they are very inexpensive when dried. Rice is gluten-free along with corn. You can buy frozen fruits and veggies , or canned, but read the labels!!!

To save money be careful about reading labels. If you aren't sure, don't buy it. Buy what's on sale and freeze it for later.

Others here have great hints about gluten-free on a budget. Stay away from the processed stuff and it can be very budget friendly.

[squirmingitch]

Be warned that if you go gluten free as a test & then later wish to get tested & get an official dx of celiac or dh then you will have to go back to eating gluten for at least 2 months. And that's where the problem is. Most celiacs react stronger when they go back to gluten after having been off it for a trial period. And dh tends to come back with a vengeance after having been gluten-free for a trial. So think long & hard before you jump.

As to expense with gluten-free foods; it's like Prickly says. Don't buy the processed stuff --- you don't need it other than perhaps the gluten-free bread but there are ways around that too. Lettuce wraps for sammiches & burgers. Or corn taco shells. Whole foods are your ticket. I wouldn't even bother with canned veggies --- I rarely eat any of them. The only canned thing I eat is garbanzo beans cause I can't find them fresh & sometimes I eat baked beans but not often.

And here's another link for you:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[ciamarie]

I wasn't aware of what prickly mentioned, about DH celiacs testing better on some celiac tests than others, so perhaps getting those tests if you can before going gluten-free would be something to try if you want a dx. I can just about guarantee that you will not want to go back to eating gluten later for testing.

And I'm currently on unemployment, and the food budget is challenging but not impossible. I also have a Costco membership, which helps too and I'm going to renew it this month -- even though I don't buy a ton of stuff there, it's good quality. If you're used to going to discount stores (like Big Lots), which is what I do, just keep an eye out for gluten-free options.

I also buy dry beans and cook them in a pressure cooker, but they can be cooked on the stove also. Soak them first, I've found that for some beans like pinto beans, an overnight soak is better, though I recently did some navy beans after only soaking about 6 hours and they're fine. One other thing I do at some stores is check their marked down meat selection. I've found you pretty much have to plan on cooking it the same day you bring it home, even if it has 1 or 2 more days on the label. However, I recently got a package of 3 boneless skinless chicken breasts for $3. I also found out there's an Asian food store nearby that I'm going to check out, for things like rice noodles and rice vinegar and possibly rice flour.

Basically, the only pre-packaged gluten-free things I buy is Pamela's cookies and sometimes some Ener-G bread (brown rice loaf usually), and some organic cereal if I find it on sale, plus Winco has Envirokids cereal. I also spend a bit extra to get organic heavy cream every couple of weeks or so, since it doesn't have anything added. As for secondary sensitivites, for me it appears to be MSG and I think also sulfites, and I avoid soy. The DH and itching is much much better, but I'm still having some issues with ringing in my ears.

It's a work in progress. I believe there are some threads in the cooking section for low-cost meal ideas, too.

[Di2011]

I'm restricted - no gluten, corn (and loads of other high salicylate foods) which takes out most gluten free foods. It is the cheapest grocery ever.

Buy whatever meat is cheapest/discounted and store in user friendly portions in the freezer. Same with veg/fruit. Buy the specials.

The only processed food I can tolerate is rice crackers (only plain/original flavour), one brand of rice wrappers and rice noodles.

I can tolerate a moderate amount of dairy (lots of butter/cream in cooking for calories but probably not so good for heart health ;(

Cheap as it gets

[BubblesandBunnies]

Sadly, I don't have the funds or mobility to buy cheap and store. My monthly income and mobility issues limit me to shopping no more than once or twice a month, and I am limited by what is available at that time. Money wise I don't have enough to just stock up on stuff when I find excellent sells, and still have enough left over for each months food supply.

Unfortunately this is the situation I am stuck with and cannot improve it, that said, I am still hopeful I can find a way to do this, even on such restrictive living.

-About being tested: I shouldn't go gluten free until after I have been tested, unless I want to put myself through extra suffering later?

Ok well I can't get an appointment with my doctor to get orders for more blood tests until the very end of June at the earliest, Is there anything I can do in the meantime to ease my itching regardless of gluten intake?

-Bubbles&Bunnies

[pricklypear1971]

As far as the rash goes - keep it lubricated and use ice packs. If you take a pain reliever use Tylenol instead of an NSAID.

Read through the DH forum for tips and see what you can do in your situation.

It may not be worth trying to hold out for testing - meaning if they won't give you the appropriate testing why continue the pain?

[eatmeat4good]

You can do gluten-free on a budget.

I am severely limited on money for food, but I make it.

I have DH and I will never go back to gluten.

You have got to do this if what you have is DH.

I had it for 7 years and now I am free of the rash but it took me a year and half to heal completely.

I didn't get any answers from all the Dr.'s and dermatologists I went to for years.

They just don't know about or believe in this disease.

Go gluten free if you think you have found your answer.

Don't waste the money on Dr.'s because in the end gluten free is your only answer if that is DH.

Use the money for food.

Here is how you survive when you are broke and need to be gluten free.

Buy meat, chicken and vegetables.

I don't buy ANY gluten free packaged foods. It's not necessary. Not flours or anything like that.

If I need a sweet treat, I eat a Snickers...they are gluten free.

Rice and corn tortillas are cheap.

I got rid of those too though.

I went Paleo and my recovery went super fast after that.

Watch the iodine...it's a serious issue for some of us with DH.

I don't have to limit it anymore but I did have to for a really long time.

Thyca.com can help you if you need to limit iodine. You will know because you will still have breakouts when you go gluten free if the iodine is contributing.

I'm free of sores for the first time in 8 years.

so relieved.

I hope this is your answer...it is well worth the fight!

[itchy]

Bubblesandbunnies: Having worked in a food bank in a major city and having a low income myself, I know what a struggle it is for disabled people on benefits to put food on the table. Doubly so if you don't have good mobility and can't store bulk food. People on extremely low incomes rarely have the cash in hand to take advantage of bulk deals, so it is hard to get ahead. It will be harder on a gluten free diet, but when you have DH there isn't much choice in the matter. If you have DH you are coeliac which is over time a life threatening condition but only untreated.

Eatmeatforgood had some great suggestions.

You didn't give other details of your circumstances, such as whether you live in a big city, or what part of the US. Certainly if you live where there is a large Asian population there may be access to cheaper sources of rice based products and asian vegs, etc. which are often much cheaper than than in the supermarket.

Manufactured food of most kinds poses risks for coeliacs, the safest is always fresh food, which unfortunately is often expensive. Frozen may be the cheapest, safest option. If you have the cash and space for a deep freezer buy a small one and freeze vegetables when they are on sale in season.

Buying food labelled gluten free can be extremely expensive, esp at specialty stores. I rarely go there because I rarely feel the need. My solution was to rethink my approach to diet, and to decide that I don't need to 'replace' my previous diet. I no longer eat cake, sandwiches, cookies, etc. No need for gluten free substitutes. Instead I eat a more 'asian' diet. One exception locally here in Canada is that I can buy gluten free oatflakes from a local supplier at good prices. Watch for exceptions like that. Porridge is cheap.

Some areas have 'gleaners' groups, often informal, that collect up unharvested fruit, etc. If you can find one and explain your circumstances you may get some free vegs or fruit. When I worked at a food bank we gave away lots of naturally gluten free food. Unfortunately most of the staff didn't have any knowledge of the diet so it was a hit and miss affair. As a coeliac I made a big effort to connect the right food with the right people, but it was never quite satisfactory.

Best wishes.

[BubblesandBunnies]

Bubblesandbunnies: Having worked in a food bank in a major city and having a low income myself, I know what a struggle it is for disabled people on benefits to put food on the table. Doubly so if you don't have good mobility and can't store bulk food. People on extremely low incomes rarely have the cash in hand to take advantage of bulk deals, so it is hard to get ahead. It will be harder on a gluten free diet, but when you have DH there isn't much choice in the matter. If you have DH you are coeliac which is over time a life threatening condition but only untreated.

Eatmeatforgood had some great suggestions.

You didn't give other details of your circumstances, such as whether you live in a big city, or what part of the US. Certainly if you live where there is a large Asian population there may be access to cheaper sources of rice based products and asian vegs, etc. which are often much cheaper than than in the supermarket.

Manufactured food of most kinds poses risks for coeliacs, the safest is always fresh food, which unfortunately is often expensive. Frozen may be the cheapest, safest option. If you have the cash and space for a deep freezer buy a small one and freeze vegetables when they are on sale in season.

Buying food labelled gluten free can be extremely expensive, esp at specialty stores. I rarely go there because I rarely feel the need. My solution was to rethink my approach to diet, and to decide that I don't need to 'replace' my previous diet. I no longer eat cake, sandwiches, cookies, etc. No need for gluten free substitutes. Instead I eat a more 'asian' diet. One exception locally here in Canada is that I can buy gluten free oatflakes from a local supplier at good prices. Watch for exceptions like that. Porridge is cheap.

Some areas have 'gleaners' groups, often informal, that collect up unharvested fruit, etc. If you can find one and explain your circumstances you may get some free vegs or fruit. When I worked at a food bank we gave away lots of naturally gluten free food. Unfortunately most of the staff didn't have any knowledge of the diet so it was a hit and miss affair. As a coeliac I made a big effort to connect the right food with the right people, but it was never quite satisfactory.

Best wishes.

First, let me thank everyone for replies, there's been some great help for me.

Let's see. info about me. Well I live in Las Vegas, NV. Admittedly I don't really know what's available in my town, but do to my mobility issue, I don't really have access to much anyways. (for example. Some people I know have been suggesting a market called Winco(sp?) as a good place to get gluten free products. but I happen to live on the side of town that has absolutely no Winco's =( so I don't really have access.

Still, I will be attempting with my next budget to go as raw as I can ie meats rice veggies fruit, non processed non coatings etc. and I have located a few interesting recipes for completely gluten free cookies I can make at home. I'm going to give it the best go I can.

I also have another question if anyone knows the answer to. I've seen it said that NSAIDS should not be taken while gluten free. Now my problem is that Tylenol has never worked for me unless I take double and sometimes triple the dose, but advil has always worked well for me (many times even with only half a dose) (I don't really know why that is).

I went and looked at Advil's website, and their faq only lists Liquigels and Migraine formula as containing the wheat derivative.

So, what is it about all forms, and not just the ones I listed that make them hands off?

Thank you all for the continued stream of information.

[pricklypear1971]

First, let me thank everyone for replies, there's been some great help for me.

Let's see. info about me. Well I live in Las Vegas, NV. Admittedly I don't really know what's available in my town, but do to my mobility issue, I don't really have access to much anyways. (for example. Some people I know have been suggesting a market called Winco(sp?) as a good place to get gluten free products. but I happen to live on the side of town that has absolutely no Winco's =( so I don't really have access.

Still, I will be attempting with my next budget to go as raw as I can ie meats rice veggies fruit, non processed non coatings etc. and I have located a few interesting recipes for completely gluten free cookies I can make at home. I'm going to give it the best go I can.

I also have another question if anyone knows the answer to. I've seen it said that NSAIDS should not be taken while gluten free. Now my problem is that Tylenol has never worked for me unless I take double and sometimes triple the dose, but advil has always worked well for me (many times even with only half a dose) (I don't really know why that is).

I went and looked at Advil's website, and their faq only lists Liquigels and Migraine formula as containing the wheat derivative.

So, what is it about all forms, and not just the ones I listed that make them hands off?

Thank you all for the continued stream of information.

NSAIDS aggravate DH in some people. That's why we would stay stay away from them...not the gluten-free part (well, you'd want gluten-free NSAIDS).

If you are looking for food ideas there are tons of web sites/bloggers out there.

I suggest joining Pinterest for some good gluten-free inspiration. Lots of pins there for recipes and ideas.

[ciamarie]

I do have one suggestion on the gluten-free cookie recipes you have, and that is to make a 1/2 batch the first time you try one if it's possible. That way you can see how it turns out and don't waste ingredients. Unless you're the type of person (like I am) that will eat them even if they aren't quite what they should be. Sometimes recipes take a little tweaking. I hope you find good options!

[BubblesandBunnies]

Ok, so I am confused.

I've been to a number of manufacturer websites for things like snack foods condiments etc, and went ahead and bought and consumed anything they listed as gluten free.

Just a moment ago I got a craving for some flaming hot chips, and went over to frito-lays website to see if the chips I wanted were on the gluten free list.

They are....but.... upon reading the disclaimers I find that 1 section says: Gluten Free and near the bottom of that section it lists that all products have less than 20 ppm of Gluten..... Now I don't know what 20ppm entails, but if someone suffers from complete gluten intolerance/allergy, then how can someone claim something is gluten free when it has any gluten no matter how small a trace?

under a secondary list they also list products that are gluten free, but may have been used on machines that processed gluten containing goods...

Is this just false advertising, or am I just too new at this gluten free and taking things for granted?

I am guessing most companies claim gluten free in these ways, What companies can I actually trust to be gluten free when they say they are?

(I've seen on these boards in various places and on other websites, people claim kraft is really good about total honesty on gluten free products, are there any other companies I can actually trust?

I've been trying to go gluten free for about 2 months now, but I just keep finding myself being suckered by products I can afford to buy.

Is it just me? or do plenty of new to gluten free living persons go through this growing pain?

Thanks.

[ciamarie]

It's just you. The rest of us have been doing everything perfectly since we started on a gluten-free diet. Sorry - I'm kidding! There is definitely a learning curve, and some things agree with some of us, and others can't tolerate those same things. And the 20ppm is the proposed FDA standard, though there isn't any legal requirement on the 'gluten-free' designation in the U.S. at the moment.

Plus sometimes companies that used to be good, or not so good, change their practices so you still have to check labels on a regular basis. There are also a couple of private 'certified gluten-free' organizations, you can research their standards and look for a listing of the products with their certification. Here's a link for one I have bookmarked: Open Original Shared Link

[BubblesandBunnies]

Thanks for the reply and web addy. =)

quick question: Public BBQ grills, yea or nea?

My friends invited me over for a bbq tonight, but they plan to use the public grills in our apartment complex. They don't really have the tools to do more than give the grill a satisfactory (to them) clean up.

Most bbq sauces and marinades (at least that I have found at the local supermarkets) usually have some gluten based product or wheat itself in them.

Do I need to worry about cross contamination? or is the very act of the fire pre-grilling good enough to take care of that?

Thanks again, for all continuing replies =)

[Di2011]

Public and friends/family BBQs were a constant source of cross contamination in my early days. Let us know how you reacted, if at all. Hopefully you are not as sensitive as me !!!

[BubblesandBunnies]

Public and friends/family BBQs were a constant source of cross contamination in my early days. Let us know how you reacted, if at all. Hopefully you are not as sensitive as me !!!

yeah lets see. I had chicken grilled with no BBq sauce, homemade potato salad that if I was shown all the exact ingredients they said were in it shouldn't have had any gluten, and a few hot dogs who's only unknown ingredient was what was listed as "flavorings" but didn't list what was in said flavorings.

My rashes haven't itched this much since the end of the month. I'm guessing cross contamination, Not showing me ALL the potato salad ingredients or hot dog "flavorings" did it to me, perhaps even all of the above.

And I suppose it doesn't help being laughed at or harassed for being what my friends consider as too nit picky about ingredients. *sigh*

[kareng]

yeah lets see. I had chicken grilled with no BBq sauce, homemade potato salad that if I was shown all the exact ingredients they said were in it shouldn't have had any gluten, and a few hot dogs who's only unknown ingredient was what was listed as "flavorings" but didn't list what was in said flavorings.

My rashes haven't itched this much since the end of the month. I'm guessing cross contamination, Not showing me ALL the potato salad ingredients or hot dog "flavorings" did it to me, perhaps even all of the above.

And I suppose it doesn't help being laughed at or harassed for being what my friends consider as too nit picky about ingredients. *sigh*

The hot dogs were likely fine as most or allmost all in the US do not contain gluten. The grill could be an issue. If they have cooked buns or soy marinated stuff on it. My mom' s potato salad should be gluten-free but she drains the potatoes in the same colander she has drained pasta in for 25 years.

[squirmingitch]

B&B, I'm so sorry you're itching like the devil. I hope it doesn't last long. From these things we learn though. We learn not to let peer pressure make us do things we know is not the best idea. We learn to be strong & just say NO. And we learn how to protect ourselves. We learn to always take our own food. I'm not honking on you & I truly feel for you with your rash flaring up.

[Di2011]

B&B, I'm so sorry you're itching like the devil. I hope it doesn't last long. From these things we learn though. We learn not to let peer pressure make us do things we know is not the best idea. We learn to be strong & just say NO. And we learn how to protect ourselves. We learn to always take our own food. I'm not honking on you & I truly feel for you with your rash flaring up.

You are so right squirmingitch. We've all learnt the hard way, haven't we ?! sigh..

It took me a long while to come to terms with the fact that not eating out (cafe/restaurants and friends/family homes) was going to be for a lifetime. I still occasionally yearn for an easy, yummy, clean-up free snack or meal. But the memory of how bad that all over itch was, the blood, strange glances when in public or even with friends/family, dressing head to toe for 12 months and the months of little to no sleep all take their toll and have left a permanent memory. Life for me is better being strictly gluten free. Far more positives than negative. I believe here in Canberra, Australia there may one day be a strictly gluten free restaurant (there is a very good daytime cafe/bakery - "Deeks" - which is popular even with non-Gluten-Free folk). How nice it would be to have a seriously delicious meal with friends/family just one night )))