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» LymeNet Flash » Questions and Discussion » General Support » should you do gluten free without diagnosis?

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Author Topic: should you do gluten free without diagnosis?
randibear
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my sister has some kind of horrible skin disease. looks like severe eczema or psoriatic something or other. I'm scared to be around her, honest.

so the doctor puts her on dairy and gluten free. he did not test for celiac or crohns, diabetes, nothing.

she's been doing this for about six months and said nothing has changed. skin is still bad and she's really struggling with this diet.

she's going to tell her doc this ain't working and wants to go back to a more normal diet.

now I personally know her home life is a living hell. her husband once attacked her daughter with an ax and the poor boy grew up a total basket case.

my other sister says its chronic extreme stress cause they've tried everything.

I digress...my question is..should you do gluten dairy free with no diagnosis or tests? I mean it's apparently not having an effect so why do it?

and she's one who absolutely says lyme is in my head.

--------------------
do not look back when the only course is forward

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Keebler
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-'
I feel for your sister for the environment / relationship matters, of course.

Regarding difficulty with GF diet, it need not be hard once it's sorted out.

Re: diagnosis

Many doctors don't do the gluten / celiac tests correctly so, IMO,

it is good to do a trial on one's one. Later, a test can be done and it's best to have it be the GENETIC BLOOD TEST. Not a stomach biopsy or saliva as they can miss a lot.

The genetic blood test for CELIAC.

However, there are other methods of determining various levels of gluten sensitivities but they also can miss sometimes.

The thing is, first, many who think they are gluten free are not really because they may not be aware of all the hidden gluten.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);

GMO foods that destroy the GI Tract; Gluten; Dairy.

HIDDEN SOURCES OF GLUTEN links here
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Keebler
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Even though it's not seeming to have an effect does not mean it's not ONE issue, there just may be so many issues involved.

First, determine if it's really been a gluten free diet, even regarding lip balm, cough drops, salad dressings, mustard, etc.
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Samlyme
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Your sisters Dr should send her to a specialist. Either a gastroenterologist or probably first a dermatologist. It's so typical of a GP to say "try this and see me in six months".

No follow up in that long doesn't sounfpd right either.

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Lymetoo
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That being said... I was tested INCORRECTLY more than 40 yrs ago. It left me with the VERY false sense of NOT having gluten intolerance when I most certainly DID.

I took it as a wheat allergy and avoided wheat for 30 yrs.. only trouble was that I was still eating oats. Long story made short, I finally put two and two together about 10 yrs ago and went completely gluten free.

If you have a true celiac test, you must eat the equivalent of 5 slices of bread every day for 3 months. Well, NO THANK YOU. I'd rather die of natural causes! HA!

So I will continue to avoid gluten.

I'd be willing to bet that your sister has candida at the root of her problems. She most likely has eczema and/or psoriasis as a result.

Please send her this and encourage her to stick to her diet and add in the anti-candida diet.

http://www.ncbi.nlm.nih.gov/pubmed/12826451

She needs to make sure she has avoided gluten EVERYWHERE .. and I mean EVERYWHERE. If she is eating out, then she is getting glutened somewhere unless she is extremely careful and the restaurants are extremely careful. (that is rare)

www.celiac.com is a valuable resource

--------------------
--Lymetutu--
Opinions, not medical advice!

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LisaK
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I am sad to hear your sister's story!

my daughter gets psoriosis badly sometimes and it is very unsightly. this is usually brought on by stress for her.

on the other hand, I know someone that had a terrible skin rash everywhere on her body for years. she never really figured it out, but one year she got some help through therappy which got her to realize she was harboring deep anger and resentment for a few men in her life from childhood that molested her. - close relatives.

after that- coming to grips with her feelings about it al- helped her heal her mind and then the rash just went away!


of course, I amnot an expert, but I jsut thought I would share this with you in case it helps.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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oh! and I don't thinkg gluten free would hurt anyone, unless the stuff your eating to replace is not meant for you.

I like the blood type diet .

___

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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randibear
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she's extremely careful so she's doing it right. she was sent to columbus and cincinnati for all kinds of tests. even went to mayo.

no treatment has worked.
steroids did nothing. candida treatment nothing. she even took some kind of light and hyperbaric treatments. nothing.

personally I wish she'd get tested for lyme but it ain't gonna happen.

my bet is extreme stress induced. she's been almost choked to death, beaten, you name it. and lots of screaming and throwing things.

we've tried to get her to leave him but no go. she's afraid to be out on her own. got married at 18 and is now 70.

family agrees this treatment is not working. seems like tests would show something. she said she's spent thousands.

could be lyme tho right?

--------------------
do not look back when the only course is forward

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Lymetoo
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More likely to be candida due to the rash ... it comes from the gut. Her gut health is obviously poor.

If she is now eating gluten free breads, cookies, etc then she is no better off than when she started.

--and YES, stress will make it worse --

I'm speaking from experience on the eczema and gut health.

--------------------
--Lymetutu--
Opinions, not medical advice!

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randibear
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hmmm she said she went out saturday and had gluten free pizza.

didn't know there was such a thing.

--------------------
do not look back when the only course is forward

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Lymetoo
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I can't eat GF pizza anymore. Food colorings, flavorings, chemicals will make skin rashes worse.

That means any processed food is OUT.

Dairy is a major culprit too... she just had dairy. Maybe dairy is a bigger issue than gluten for her?

I have to avoid both.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Catgirl
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Poor thing (feel sorry for your sister). Lymetoo is right, dairy is a big issue. It could also be meat. I know people who've eaten beef and had a similar reaction to your sis. They no longer eat beef but have other issues that sound just like lyme.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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randibear
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she's been like this for several years now.

--------------------
do not look back when the only course is forward

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Keebler
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GF Pizza, out in a restaurant, likely not GF at all, sadly.

If there is flour flying around in the kitchen, if the staff preparing the pizza is not wearing separate clothing and cleaned off after working with flour, etc.

or if a frozen pizza, when it might have been sitting out or on way to oven, if it was not in a certified GF room, with a separate air flow, it may not be GF.

I know this is a hard call, I've had to make it. The restaurant's website should first be consulted, then then main office called to find out if their pizza really is GF and all staff are aware and practice GF preparation and presentation.

It matters very much.
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Keebler
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A restaurant near me. It says it has a GF pizza - it DOES NOT. Not at all. That would be missed on their first page. Only on the very bottom of the second page, and then don't really explain. They are not well educated in what it all means.

http://www.pizzicatopizza.com/our-food/gluten-free-pizza/

Pizzacata Gluten-Free Pizza

http://www.pizzicatopizza.com/gluten-free-toppings-list/

Pizzicato Gluten Free Toppings

[many listed ]

NOTE FOR THOSE WITH CELIAC DISEASE AND WHEAT ALLERGIES:

Although we offer a gluten-free crust, there is wheat flour in our cooking area.
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Keebler
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It can take six months for the brain to "clear" a mistake, by the way. So, it's back to the starting gate for one mix up.

It's still so well worth it, once the learning curve is conquered and all is figured out.

And, no one ever need feel deprived. There are so many fabulous foods to enjoy that are naturally GF. Condiments need special attention, as well as the preparation area.

A store deli is not GF, unless they have dedicated GF set-up, with separate ventilation, etc.

Restaurants can be tricky but, still, there are ways to work around this. Also this can widen one's outings to include places that may not involve food, such as museums, galleries, other art places . . . .
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Keebler
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A genetic blood test for CELIAC seems wise at this point. From a place that really knows what they are doing. So many do not.

It's important to learn WHY one is going through this effort, though. It's not just for the gut. For those affected in varying ways by gluten, it can cause depression, anxiety, brain-fog (and even other issues with and within the brain).

And, yes, it can be connected with skin issues - why your sister started this trial.

Still, it's not just gluten that would be suspect but also the products used in personal care, laundry and household, etc.

What kind of good fats she's getting (enough?), and other nutrients as well as the general health of her liver. Liver stress can manifest in skin.

I really feel for her with personal matters so rough to also have to change so much about just how she lives. But, if she can make the changes and understand the reasons - stick with it and be certain she does not get "glutened" by mistake, it could really help.

Even with the celiac diagnosis, it took me a very, very long time to really get the fact that there is absolutely zero - zero - room "cheating" or "relaxing" - a trace of gluten - for me - would trigger a seizure within 3 days.

Learning not just how to trace that was interesting but then I just learned that one can never trust food at a pot luck no matter how sure the dish's "chef" was in what they put in it.

"Spanish Rice" in a restaurant was loaded with gluten, listed as the top ingredient -- I discovered in a follow-up phone call.

At the very least, as long as the "GF" convenience foods are not in the picture, going GF should help with glucose stability.
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GretaM
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In my opinion and personal experience,
11 years of guttate psoriasis was actually RMSF, lyme and other undiagnosed untreated TBDs.

Also, gluten/wheat nowaddays isn't really wheat.
It has been engineered so much our bodies are unable to recognize it and see it as a foreign threat, which potentiates autoimmune disease.

Wheat is not good for anyone. Period.

I tested neg for celiacs. But feel a million times better when I don't eat wheat products.

There are so many comparable gluten free products, Mary's Crackers are a fave of mine.

Why anyone still eats wheat is beyond me.

But guessing from what you wrote Randi, your sis probably won't go for igenex lyme tests?

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Lymetoo
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By the way, it can take more than 6 months to clear damage from gluten... so even IF she has been completely free of gluten for 6 months .. it may not have helped yet.

She likely has many chemicals in her house, in her foods that are keeping things stirred up. It will take diligence and maybe a wise health coach to help her straighten things out.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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The important focus is not what is being given up but what will be gained. A "good clear out" can help in so many ways.

I also feel better in that I'm no longer going to be the guinea pig or cash cow for the processed food "industry" or their "products" - I have rediscovered what real food, real culinary herbs & spices are all about - and it is really life affirming.

I hope she might have friends / family who could help make this journey (or venture into a new neighborhood of sorts) fun and interesting. Maybe others will hop on.

Her local celiac support groups can be very good connections (if they are not too much into processed alternatives). Community cooking classes can be a blast, too. Mediterranean is where I'd start.
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LisaK
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I ask to see ingredients when the place says "gluten free" and yes, there IS gluten free natural pizza and some places even serve it with a tiny pizza cutter that has never touched a regular pizza!

but..... they all taste terrible!!! yucko

I can't eat most gluten free becasue it always seems to have corn or potato, which upset my gut as much as wheat! or give me thyroid issues. (corn)

I eat spelt. I can tollerate spelt. I am allergic to "wheat". and I CAN eat spelt!

dairy really bugs my stomach and GI too.

at 70 .... I would say pray for her to find her way. my mom is 83 and admits she prob has lyme now, but still does nothing for that. she would rather get poked and tested by her md for everything else.

and she won't leave her abuser???

that is so sad.

sounds like you need to let this one go. she sounds very stubborn. I would just pray.

I have been all down that celiac road too..... what a waste of time

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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Lisa, (and for others - re: spelt)

I'm glad your stomach seems to handle spelt yet it's important to know that it contains as much gluten as wheat. I did not know this for a long time when I first gave up wheat, rye, barley - but when I left spelt out I did so much better.

Have you had the genetic blood test for celiac?

It might be good to do that so that you can be sure if spelt would be safe for you to continue.

It could be affecting you in some ways you may not connect to gluten. It's not always the gut that gluten clobbers, it can cause depression, pain, brain issues, etc. There are many posts of yours with a wide range of symptoms - the gluten in spelt could be partly connected.

A GENETIC BLOOD test for CELIAC could help you know.
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Keebler
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Gluten containing grains:

Wheat (and its relatives: Spelt, Kamut, Farro)

Rye

Barley

And Oats are often contaminated with wheat bits so they must come from a dedicated GF facility and be labeled specifically to be certified GF.

Buying in BULK - from bins in the store can be problematic and just not safe for someone who needs to avoid gluten, as these bins are usually filled in one room in the back where flour flies, the air vents move flour and bulk food "dust" around - and workers' clothes do, too.

Beyond this, consult the official celiac websites for lists of processed foods. One common one missed is

Soy sauce - just one of many "sauces" that contains gluten. Wheat free Tamari would be the substitute.

Canned or boxed broths often contain barley. Sigh! Even Trader Joe's box broths (although labeled GF on the box front) are NOT ! I forget which ingredients listed give it away but it may be barley -- or "natural flavors" which can often contain gluten, too.
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