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Help! Please!


CeliacFashionista

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CeliacFashionista Apprentice

I think we've all MOL been there, done that. I hear your frustration. I feel you fright & confusion & even panic. Been there, done that. I soooo sympathize. And I wish you weren't going through all this. Great big (((HUGS)))!!!!!

One question before I forget --- can you stand "stinky cheeses"? You know, like Stilton & the like? I can't hack them personally. But you may be able to eat those. They are tolerated better than regular dairy & the way I understand it; something about them makes them low iodine. So that may be an option for you. And we know you could use the fat.

I also am skinny. 97/98 lbs. You could blow me away in a good breeze. I always have been thin but for 32 years I weighed 103 & then when this all began to hit me about 8 yrs. ago I suddenly lost 5 lbs. & even now, gluten-free, I have not regained those lbs. yet. Eat cashew butter, hazelnut butter, sunflower seed butter on brown rice cakes or whatever else like golden delicious apples. Use safflower oil in/on everything you can think to put it on. Iceburg lettuce & leek salad with safflower oil & lime for dressing. Like Dani said, chicken wings. You need lots of protein. I have an entire box of nuts sitting here. I eat lots of nuts --- pecans, cashews, hazelnuts, walnuts, sunflower seeds, pumpkin seeds -- all unsalted of course -- you can add non iodized salt yourself if you like. I made a great, fast snack the other night. Golden delicious apple peeled & cut up & put in microwave dish. Sprinkle with cinnamon & drizzle with safflower oil & I sprinkled a little brown sugar on but you may wish to avoid sugar with the candida. Nuke it for a minute. YUM!

How long have you been gluten free? You probably said but I forgot.

I have been gluten free for 3 months now...with the a occasional cc. I weigh 106 Im 5'3. I weighed 115 before I got sick and went gluten free. I have not tried stinky cheese but I don't really like them. Is feta cheese included? Is nutella ok? I'm not avoiding sugar I have enough to avoid I cannot bear trying anything else. lol. I will try eating more nuts I love sunflower seeds/pumpkin seeds!


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pricklypear1971 Community Regular

I have been gluten free for 3 months now...with the a occasional cc. I weigh 106 Im 5'3. I weighed 115 before I got sick and went gluten free. I have not tried stinky cheese but I don't really like them. Is feta cheese included? Is nutella ok? I'm not avoiding sugar I have enough to avoid I cannot bear trying anything else. lol. I will try eating more nuts I love sunflower seeds/pumpkin seeds!

Nutella is probably ok - its hazelnuts. But it does have dairy and I'm not sure of the chocolate source. It's one of those things you'll need to eat in moderation if you can. It's like crack.

Look up pumpkin seeds and see if they're low sal. I don't remember.

IrishHeart Veteran

Nutella is full of sugar.

You are telling us you have bad yeast, but you are eating sugar. That's what feeds the yeast, hon!!!

You can take all the BS supps in the world and drink kefir, etc... but eating sugar is not helping you.

You are eating too many processed foods. That's your problem.

Pumpkin seeds are low-moderate

You need to go back to basics.

CeliacFashionista Apprentice

Nutella is probably ok - its hazelnuts. But it does have dairy and I'm not sure of the chocolate source. It's one of those things you'll need to eat in moderation if you can. It's like crack.

Look up pumpkin seeds and see if they're low sal. I don't remember.

Its says pumpkin seeds are moderate. Okay maybe just nutella on rice cakes as a ocassional treat.

squirmingitch Veteran

I have been gluten free for 3 months now...with the a occasional cc. I weigh 106 Im 5'3. I weighed 115 before I got sick and went gluten free. I have not tried stinky cheese but I don't really like them. Is feta cheese included? Is nutella ok? I'm not avoiding sugar I have enough to avoid I cannot bear trying anything else. lol. I will try eating more nuts I love sunflower seeds/pumpkin seeds!

Well hell honey, you're fatter than me! I'm 5'2" & 98 lbs. See, you DO have something to be happy about.

Now, my hands are getting sore as all get out. Neuro stuff. Can't type any more tonight or I won't be able to hold a fork tomorrow or an apple!

I'll click around a little while & see if I can find the flax seed oli info. But I gotta get off my hands.

CeliacFashionista Apprentice

Nutella is full of sugar.

You are telling us you have bad yeast, but you are eating sugar. That's what feeds the yeast, hon!!!

You can take all the BS supps in the world and drink kefir, etc... but eating sugar is not helping you.

You are eating too many processed foods. That's your problem.

Pumpkin seeds are low-moderate

You need to go back to basics.

I don't eat much sugar and I refuse to limit my diet anymore. You can cure candida while eating sugar my friend has cured here with the acv/baking soda/lemon combo and she had it worse than I do. There are way to many people who limit sugar and still have candida so I don't think it will be that much of an issue. Either way I'm trying to take one step at a time. I take probiotics because I feel better on probiotics. I had one box of enjoy life! I haven't hadn't any processed foods other than that in the past 3 weeks. I ate that because I was starving and gave up on trying diets when I was so confused. My diet is chicken, rice, rice cereal, bananas, lettuce, kale, broccili, water, acv/baking/soda/lemon water, occasional olive oil. My skin was doing good before the naked juice(now I know why). I had no yeasts infection until after I stopped taking kefir(probiotics) and I just got off of pred so I'm sure that is what made is worse.

IrishHeart Veteran

I don't eat much sugar and I refuse to limit my diet anymore. You can cure candida while eating sugar my friend has cured here with the acv/baking soda/lemon combo and she had it worse than I do. There are way to many people who limit sugar and still have candida so I don't think it will be that much of an issue. Either way I'm trying to take one step at a time. I take probiotics because I feel better on probiotics. I had one box of enjoy life! I haven't hadn't any processed foods other than that in the past 3 weeks. I ate that because I was starving and gave up on trying diets when I was so confused. My diet is chicken, rice, rice cereal, bananas, lettuce, kale, broccili, water, acv/baking/soda/lemon water, occasional olive oil. My skin was doing good before the naked juice(now I know why). I had no yeasts infection until after I stopped taking kefir(probiotics) and I just got off of pred so I'm sure that is what made is worse.

You are not listening.

Your diet has high sals and has sugar in it.

I am sorry, but NO sugar is good for yeast.

We are trying to tell you what works, but you keep arguing against everything we say.

Like squirmy, my hands are tired ---and I have given you my best advice and what worked to get me out of the hell I was in---and I fear you will just do what you want no matter what we say. This is going round and round in circles.

I wish you the best.


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CeliacFashionista Apprentice

You are not listening.

Your diet has high sals and has sugar in it.

I am sorry, but NO sugar is good for yeast.

We are trying to tell you what works, but you keep arguing against everything we say.

Like squirmy, my hands are tired ---and I have given you my best advice and what worked to get me out of the hell I was in---and I fear you will just do what you want no matter what we say. This is going round and round in circles.

I wish you the best.

If you read the other post you will see that I just stated that I am postponing the candida diet because I cannot do all these restrictions at once. I just started eating low sals since last night. What I just stated I was eating is before last night. I AM listening but do realize I am taking in the advice from the other posters as well. I think you are taking my reply differently than everyone else as I agreed to change my diet after the advice of several posters on this board. Do I still believe you can control candida while eating sugar? YES But I did not come on this forum for advice on how to control candida. I asked how to control DH which is the advice I have taken from every poster that has posted on this topic. I in no way wanted to come across as tho I am I do not value your advice but at the same time you are stating things that are untrue like I am eating too much processed food and probiotics are no help with out cutting out sugar. Probiotics have def. helped me and I did not start feeling bad until I stopped taking them and went on pred. Thank you for your help however, I will take the advice from this post and see how my skin improves.

squirmingitch Veteran

Canola, sunflower & safflower oils are all negligible in sals.

Buckwheat -- she can have buckwheat --- Pocono buckwheat my dear.

Okay, sorry -- seems Flax seed oil has small amts. of sals. See it listed under Alternatives to fish oils:

Open Original Shared Link

Nutella ingredients: Sugar, Palm oil (high sal), Hazelnuts (OK), Cocoa (OK), reduced minerals whey (milk), lecithin as emulsifier (Soy), vanillin - an artificial flavor.

Okay, my hands are screaming. Done typing.

squirmingitch Veteran

One last typing tonight --- the naked juice -- berries also high in iodine. OUCH! iodine & sals together = no good but you know that already now.

CeliacFashionista Apprentice

One last typing tonight --- the naked juice -- berries also high in iodine. OUCH! iodine & sals together = no good but you know that already now.

Really? Wow I did not know berries contained iodine! It all makes sense now. It seems my reaction to iodine is much worse than sals which is why I never had a reaction to the flax oil, or the other high sals foods I was eating. I think high sals food really just hinder my healing so I will be sure to keep them low for a while until my skin heals. Thank you guys! You have been a BIG help!

pricklypear1971 Community Regular

Really? Wow I did not know berries contained iodine! It all makes sense now. It seems my reaction to iodine is much worse than sals which is why I never had a reaction to the flax oil, or the other high sals foods I was eating. I think high sals food really just hinder my healing so I will be sure to keep them low for a while until my skin heals. Thank you guys! You have been a BIG help!

Almost all food contains iodine because it's part of the food chain. It's in the soil, so its in fruits and veggies. There's a heavier concentration in milk products because most milk cows are on a grain feed and most dairies use iodine to clean the cows and milk equipment.

The only berry I ever worried about was strawberries. The other ones weren't on my high iodine list. I went by the thyca list and it worked fore, but everyone is different. Open Original Shared Link

I wouldn't rule out sals. That berry drink was much higher on sals than iodine, probably. You've got to remember that sals are CUMULATIVE.

So, flax+strawberry+chicken+rice+nutella still MAY equal a sals level you react to. And you may react two days later...or on the last food you ate because they finally ACCUMULATED enough to give you a reaction.

The only way you'll know is to commit to bringing one level down. You've tried iodine alone and that didn't do it. Now reduce sals and see if you get relief. HOPEFULLY, if you react to both, you can balance them so you can still eat a healthy rounded and yummy diet.

So yes, you are definitely on the right path by reducing both. I just wouldn't assume sals (or at least a few specific ones) aren't as big of a problem as iodine. You really haven't tested it enough to know.

Di2011 Enthusiast

I am hoping my timeline gives you an idea of our experiences:

After 12 months of head to toe DH I am finally seeing something approaching significant improvement. Instead of waking up with my hands and fingers covered in 3-4 dozen new lesions it is down to about a dozen new ones a day and not as severe as they were.

Early days:

I had to go low dairy in the early couple of months.

Iodine gave me an instant flare in the first 8-9 months.

Now:

*low sals has been an amazing change for my skin but only a recent discovery (about 2 months down the sals path with lots of mistakes .. slowly seem to be getting use to the minefield that low sals is)

*water - lots and lots, all day not just when you get home or feel thirsty. Lots all day. It is nice to be woken up in the middle of the night with a full bladder instead of itching and bleeding

*I've been avoid any (gluten-free included) processed food for about 4-5 months. I think this has been THE key for me

*After being overweight my entire life I am now struggling to hold at my slim but healthy weight:

I use lots of butter and sometimes pure cream, lots of meat (buy it with fat but noone is going to force me to eat a chunk of beef fat ever!!!)

Lots of mash potato with milk and butter, rice - risottos are a great way to draw out natural flavours of meat and veg (fry first to caramelise a little).

Fresh garlic goes into everything - rice, fried meats, on veg etc etc Anywhere I can think of.

Lots of low sal fruit and veg. Many fruits are surprisingly high in calories. Their consumption is highly regulated on 'The Biggest Loser'.

It took some time to get my "fat" brain to accept that a chunk of butter thrown in the pan with a T-Bone steak was the only way to keep up my calorie content. I eat lots of fruit and veg so thats how I convinced myself that the butter was okay.

I now tolerate dairy to some degree. I have a smoothy occasionally but would not do the butter/cream within the same day or two. My gut tells me when I've had too much.

CeliacFashionista Apprentice

Almost all food contains iodine because it's part of the food chain. It's in the soil, so its in fruits and veggies. There's a heavier concentration in milk products because most milk cows are on a grain feed and most dairies use iodine to clean the cows and milk equipment.

The only berry I ever worried about was strawberries. The other ones weren't on my high iodine list. I went by the thyca list and it worked fore, but everyone is different. Open Original Shared Link

I wouldn't rule out sals. That berry drink was much higher on sals than iodine, probably. You've got to remember that sals are CUMULATIVE.

So, flax+strawberry+chicken+rice+nutella still MAY equal a sals level you react to. And you may react two days later...or on the last food you ate because they finally ACCUMULATED enough to give you a reaction.

The only way you'll know is to commit to bringing one level down. You've tried iodine alone and that didn't do it. Now reduce sals and see if you get relief. HOPEFULLY, if you react to both, you can balance them so you can still eat a healthy rounded and yummy diet.

So yes, you are definitely on the right path by reducing both. I just wouldn't assume sals (or at least a few specific ones) aren't as big of a problem as iodine. You really haven't tested it enough to know.

Im def. not ruling out sals but I was eating high sals all day everyday with no reaction but as soon as I had in too much iodine that's when I get new lesions. I am almost positive that high sals are keeping me from healing as quickly though. I didn't have any new reactions until I added the naked juice and then I had a bag of cranberries and almonds so I think that caused the reaction. I've eaten a bag a cranberries daily on the low iodine diet with no itching or reaction. But I think both together are what caused me a bad reaction. But hopefully limiting both will allow healing. Then I will slowing add in high sals foods and monitor any reaction in a few weeks.

CeliacFashionista Apprentice

I am hoping my timeline gives you an idea of our experiences:

After 12 months of head to toe DH I am finally seeing something approaching significant improvement. Instead of waking up with my hands and fingers covered in 3-4 dozen new lesions it is down to about a dozen new ones a day and not as severe as they were.

Early days:

I had to go low dairy in the early couple of months.

Iodine gave me an instant flare in the first 8-9 months.

Now:

*low sals has been an amazing change for my skin but only a recent discovery (about 2 months down the sals path with lots of mistakes .. slowly seem to be getting use to the minefield that low sals is)

*water - lots and lots, all day not just when you get home or feel thirsty. Lots all day. It is nice to be woken up in the middle of the night with a full bladder instead of itching and bleeding

*I've been avoid any (gluten-free included) processed food for about 4-5 months. I think this has been THE key for me

*After being overweight my entire life I am now struggling to hold at my slim but healthy weight:

I use lots of butter and sometimes pure cream, lots of meat (buy it with fat but noone is going to force me to eat a chunk of beef fat ever!!!)

Lots of mash potato with milk and butter, rice - risottos are a great way to draw out natural flavours of meat and veg (fry first to caramelise a little).

Fresh garlic goes into everything - rice, fried meats, on veg etc etc Anywhere I can think of.

Lots of low sal fruit and veg. Many fruits are surprisingly high in calories. Their consumption is highly regulated on 'The Biggest Loser'.

It took some time to get my "fat" brain to accept that a chunk of butter thrown in the pan with a T-Bone steak was the only way to keep up my calorie content. I eat lots of fruit and veg so thats how I convinced myself that the butter was okay.

I now tolerate dairy to some degree. I have a smoothy occasionally but would not do the butter/cream within the same day or two. My gut tells me when I've had too much.

Yes! To the garlic I a putting that in EVERYTHING! lol.... and I drink water ALL day. I'm trying to make fruit and veggies the bulk of my diet but its hard because I do not live that close to the grocery store and I don't drive. I finish a bundle of bananas in two days! lol But I'm gonna go and stock up on some pears, apples and bananas tomorrow hopefully. This has been so hard because I LOVE to eat and I have always been the type to eat alot despite my small frame. I hope I can put some pounds on with fruits and veggies!

Di2011 Enthusiast

I made a point of 'testing' my dairy reaction regularly. Something in the maze of this journey told me I had to know how much I could tolerate. It has caused some near misses with the reaction in my GI system but now, in hindsight, I'm glad I did it. But I did it very slowly over a long 11 months. I have a feeling I will be watching my dairy and sals intake for life. Iodine I'm not so sure about. I'm not about to tuck into a kilo of prawns (but oh so so so so would love to) for a few years. I'll need to be 100% sure that the gluten reaction is dead and gone before I go there. No way do I want even mild resurrections from iodine+gluten.

I freeze a lot of fruit. Frozen bananas are the BEST icecream you can have in summer. You can semi thaw them to use with cereal/yogurt. Yummmo.

With most fruit you can thaw them fairly well. Put them in the blender if they go too far down the thawing processes. Nearly (or just) as good as fresh.

Here in Oz most of our major (and several smaller) supermarkets have online shopping which is delivered to your door. Have you checked out this option in your area?

IrishHeart Veteran

I in no way wanted to come across as tho I am I do not value your advice but at the same time you are stating things that are untrue like I am eating too much processed food and probiotics are no help with out cutting out sugar. Probiotics have def. helped me and I did not start feeling bad until I stopped taking them and went on pred. Thank you for your help however, I will take the advice from this post and see how my skin improves.

But I did not say probiotics will not work without eliminating sugar, hon! I said because you are concerned about yeast and sugar feeds the yeast in your gut, you want to cut it out.

If you are on prescription meds for vaginal yeast, you may wish to do that. If you do not want to give up sugar, then don't. Your call.

Didn't I recommend you take the probiotics?

I am a huge probiotics fan. :) Our guts need them.

You are drinking apple cider VINEGAR which is HIGH in Sals.

That's another suggestion I had, but you insisted your friend uses it and it works. Okay, then, do it. But it is not helpful for eliminating the sores, hon.

From the Failsafe website:

Q. Can you tell me whether apple cider vinegar has any salicylates?

A. Cider vinegar – as well as red and white wine vinegar - is listed as very high in both salicylates and amines; malt vinegar is listed as moderate in salicylates (Source: p48 “Baking aids, herbs, spices & condiments’, the RPAH Elimination Diet Handbook 2009, www.allergy.net.au) (March 2011)

I am just suggesting to you that while you are trying to treat one problem, you are taking in foods that exacerbate the other problem.

That's all I was trying to get you to see.

Nor did I say you are eating too much processed food, but I am suggesting you do a WHOLE foods diet only.

Nutella is a processed food. Rice cakes are processed foods. Cookies are too--and I know it is hard to give all these things up. :( I really do. But it is just temporary.

Processed just means anything that is not in its natural state.

I am sorry I could not be more help. I am sympathetic to your plight because I had the same issues and wanted to share what worked for me.

I know that dairy can be a problem and suggested you dump the yogurt and cheese for now.

You may have to take all the advice from everyone, make a list of what works for you and decide what's best for your situation.

You will not gain weight by eating just fruits and veggies. You need some protein in your diet.

Listen to the others' advice.

They are very wise. :)

Best wishes.

I just want you to feel better!

squirmingitch Veteran

I do not do stevia & therefore know nothing about it but those of you who do know about it --- would it work as a sweet replacement for the sugar for Fashionista?

IH, I believe Fashionista said she has dumped the yogurt.

Oh & Fashionista --- if I recall correctly, the pecans are higher in iodine so you may wish to stick with the other nuts & seeds we have listed.

Also, saffron is low sals so you can use that to spice things up. make saffron rice from white rice.

And I remember reading something somewhere about bananas & them possibly being hard to digest or causing gas for some reason re: celiac --- can't find that reference right now. Can someone please clarify that for her?

I eat bananas but in limited quantities as it does tend to give me gas so just wanted to give you a heads up on that. You just need to be aware & judge for yourself.

IrishHeart Veteran

IH, I believe Fashionista said she has dumped the yogurt.

Yup, I did see that, thanks, SQUirmy :) -- but she is also asking about feta cheese.

I thought some of you guys felt dairy provoked your sores?

okay, I'll shut up now :ph34r: and leave it you guys.

best wishes

squirmingitch Veteran

You're right IH she did ask about Feta cheese & we dropped the ball on answering her on that one. Good catch IH. You don't need to leave us. See --- you just caught something!smile.gif

Fashionista --- no feta cheese --- sorry --- only the stinky, very hard cheeses.

There will come a day when you can have lots & lots of things. But for now, you need to toe the line otherwise the day you can have all those other things will get pushed back & back & back. Toe the line now & you get those other things sooner. I think you have seen this is the truth & are dedicated to doing so --- I just wanted to remind you of the "big picture". Not honking on you okay? Call it a gentle reminder.

CeliacFashionista Apprentice

Thank You guys so much! I've narrowed down my diet to bananas, apples, peeled pears, kale,carrots,lettuce, rice, mashed potatoes(occasional) w/ TONS of garlic, Chicken and Beef, Occasional Egg Whites( I don't really do well when I eat too many eggs). Im gonna stick to this for two weeks then slowly try to added in a few other foods. My skin is clearly up now and I have no new lesions! I am still taking the acv however...I don't really take enough of it for it to effect my sals intake. Any other suggestions?

squirmingitch Veteran

Thank You guys so much! I've narrowed down my diet to bananas, apples, peeled pears, kale,carrots,lettuce, rice, mashed potatoes(occasional) w/ TONS of garlic, Chicken and Beef, Occasional Egg Whites( I don't really do well when I eat too many eggs). Im gonna stick to this for two weeks then slowly try to added in a few other foods. My skin is clearly up now and I have no new lesions! I am still taking the acv however...I don't really take enough of it for it to effect my sals intake. Any other suggestions?

You can have the potatoes as much as you want. Just make sure you peel them deeply (iodine in the skin) & they must be let's say Idaho potatoes (brown skin/white insides) for the sake of argument. Just not red potatoes or any other kind right?

You left off a lot of things you CAN eat now but if you are happy with this menu then that's cool.smile.gif

You can have pork too. And cabbage.

Keep us posted okay?

CeliacFashionista Apprentice

You can have the potatoes as much as you want. Just make sure you peel them deeply (iodine in the skin) & they must be let's say Idaho potatoes (brown skin/white insides) for the sake of argument. Just not red potatoes or any other kind right?

You left off a lot of things you CAN eat now but if you are happy with this menu then that's cool.smile.gif

You can have pork too. And cabbage.

Keep us posted okay?

I don' t really eat much pork other than bacon. Is bacon high in iodine? And I already have a bunch of chicken and beef. I also hate cabbage. I forgot about nuts so I will add those as well.

squirmingitch Veteran

I don' t really eat much pork other than bacon. Is bacon high in iodine? And I already have a bunch of chicken and beef. I also hate cabbage. I forgot about nuts so I will add those as well.

You know what? I haven't attempted bacon yet myself. And I could eat a river of bacon!!!!!!!! To say I love it would be understating. But here's how I look at the question of bacon.... a) I'm not sure if all bacon is safe or which brands are safe & haven't researched it yet B) I figure if I'm going to have any kind of reaction to anything it's going to be something I truly adore --- BACON! c) the farther down the road I get with healing the less likely I am to react to it (just IMHO) soooo d) I'm going to (ha-ha) save my bacon by saving my bacon for farther down the road.biggrin.gif

If that makes any sense.....

Good girl --- get your nuts.smile.gif

pricklypear1971 Community Regular

You know what? I haven't attempted bacon yet myself. And I could eat a river of bacon!!!!!!!! To say I love it would be understating. But here's how I look at the question of bacon.... a) I'm not sure if all bacon is safe or which brands are safe & haven't researched it yet B) I figure if I'm going to have any kind of reaction to anything it's going to be something I truly adore --- BACON! c) the farther down the road I get with healing the less likely I am to react to it (just IMHO) soooo d) I'm going to (ha-ha) save my bacon by saving my bacon for farther down the road.biggrin.gif

If that makes any sense.....

Good girl --- get your nuts.smile.gif

Most bacon is gluten-free. I use the Hormel Naturals brand (marked gluten-free) or Trader Joes. Now, they both may have salt in them but I doubt it's iodized because iodized salt isn't usually used for curing. But you never know.

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      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
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