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What's So Important About Having The Celiac "diagnosis"?

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Well, you don't need some silly doctor telling you what you can and can't eat. And ignore anyone who gives you crap about an 'official' diagnosis. You're doing it right. Good for you.

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Smart move, Nanette!!

Another smart move would be to have all your nutrient levels checked: iron/ferririn, B12, D, folate, potassium, calcium, magnesium, zinc - especially in view the stress fracture. We are often all deficient in something because of malabsorption and you need to know what instead of just throwing a bunch of supplements at it. You could need prescription strength D, iron injections, B12 injections (which I take)....

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Please bear in mind too, I'm a little overwhelmed right now already just learning the diet. I guess what I was thinking tonight was, why all this brew-ha-ha about an "official" diagnosis. Is there someone out there who WANTS to be Celiac... would anyone lie and say they have it when they don't?...just so they don't get to have any bagels, pizza and brownies? Is it because we have a greater risk of other illnesses? Like I haven't had enough already? LOL

Guess I'm just "new".

Thanks so much.

For starters, congratulations on your new-found health!

People who need a diagnosis often want the option of "cheating" on the diet. If they are not diagnosed as celiac, they think an occasional cookie won't matter. (This may or may not be true, as we know too little about non-celiac gluten intolerance.) Sometimes people just want the label. Names have a lot of power and they want an official name for their illness rather than being unsure if it's celiac or gluten intolerance. Other folks don't have the dramatic turnaround that you did so they need clarity.

If you're happy going gluten-free for life, don't sweat the diagnosis. It's absolutely not worth making yourself extremely ill for a piece of paper. You have all the genetics with the type 1 diabetes in the family and a celiac mom. For what it's worth I chose not to go back on gluten for testing and I don't regret it.

As far as other treatments, like Shroomie said you will probably need supplements to make up for years of deficiency. You should get vitamin levels done, and absolutely start catching up on that calcium!

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Your recurring rash sounds like Dermatatis Herpetiform (DH), a skin manifestation of celiac disease. If, and only if, you WANT the diagnosis, you could eat enough gluten to cause the rash to come back, and then have a dermatologist biopsy NEXT TO (not on) a blister.

How long have you been gluten-free? If it's fewer than 3 months, you MIGHT have enough antibodies to show up on a blood test. Probably haven't healed up from the damage yet, either, so a biopsy MIGHT show something. But, you know your body... you know how much better it feels off gluten. Unless you're worried about needing to have the official diagnosis for... well, I'm not sure for what, I wouldn't pursue it.

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Your story sounds a lot like the 7 years I lived through.

When i found this site I cried and went gluten free.

I have DH too, but mine is mostly on my face.

But my story would have read like yours if I'd had the energy to write it.

I just went gluten free.

I did not have great healing of my rash for the first 4 months due to the iodine connection with DH. I ate fish, shellfish, salty things etc. I knew I was gluten free and wondered why I was breaking out. Iodine....said Celiac.com. Aha! I tried limiting it but then went to the Dr. wanting to take Dapsone as I am supersensitive to CC as are most people with DH.

I didn't know what to say since I'm self diagnosed really.

So I just told the new Dr. that I have DH, the skin form of Celiac and I want to take Dapsone as I have had trouble with outbreaks.

She looked at my scars and accepted that I was Celiac and tested me for the vitamin levels I asked for. And gave me Dapsone.

Hopefully the diet will take care of your DH.

I am so happy for you that you finally figured this out.

I hope you find a good Dr. to get your levels checked.

I wish you the best and your story wasn't too long.

I am always touched and validated when I read a story that sounds like what I went through. I still have PTSD from the years of being soooo sick.

But your story helped me in a way and I'm grateful you wrote it.

Keep us posted on your recovery.

I like knowing how people are doing. :)

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Thank you so much for your kind and prompt replies. I'm glad to know I don't have to put myself through unnecessary glutening for the sake of a diagnosis.

It's difficult enough keeping gluten away on purpose, so intentionally glutening myself seems insane at this point.

Someone asked how long I'd been on the diet, and it's been just over 3 months, just fyi.

Also, I wanted to mention that I don't use "iodized" salt. I switched over to sea salt at least 10 years ago. I eat a lot of spinach, and drink almond milk for taste, but the added benefit is iodine. And I don't eat much shellfish. Seems it makes my glands swell. I only know this because when I first went gluten-free, I also pared my diet down to just the foods that have the least chance of causing an allergic reation. When I added shellfish in, I ended up having inflammation symptoms. I did eat some expensive shrimp at my sister's recently, and that didn't seem to bother me, so maybe there is something in the processing of less-expensive types or perhaps the age of the shellfish has something to do with problems.

At any rate, thanks for getting thru the awful length of my story! and responding so quickly.

I look forward to more reading here.

Thank you all,

Nanette

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Thank you so much for your kind and prompt replies. I'm glad to know I don't have to put myself through unnecessary glutening for the sake of a diagnosis.

It's difficult enough keeping gluten away on purpose, so intentionally glutening myself seems insane at this point.

Someone asked how long I'd been on the diet, and it's been just over 3 months, just fyi.

Also, I wanted to mention that I don't use "iodized" salt. I switched over to sea salt at least 10 years ago. I eat a lot of spinach, and drink almond milk for taste, but the added benefit is iodine. And I don't eat much shellfish. Seems it makes my glands swell. I only know this because when I first went gluten-free, I also pared my diet down to just the foods that have the least chance of causing an allergic reation. When I added shellfish in, I ended up having inflammation symptoms. I did eat some expensive shrimp at my sister's recently, and that didn't seem to bother me, so maybe there is something in the processing of less-expensive types or perhaps the age of the shellfish has something to do with problems.

At any rate, thanks for getting thru the awful length of my story! and responding so quickly.

I look forward to more reading here.

Thank you all,

Nanette

I posed that same question on this forum not too long ago. In my case, my insurance wont cover the testing because my issues are considered pre-existing. I went gluten free about a month ago. So far the results have been good, although not spectacular. I probably need to do an elimination diet to see if there is anything else that might be causing me trouble.

I have a question for you. I noticed that you said that you were told that you have arthritis. Has that cleared up? If so, how long did it take to improve?

Thanks for sharing your story.

Michelle

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That's a good question. I am in the thick of going to the dr's and seeing specialists. I initially went on an elimination diet to see if any of my symptons got better: cut out gluten, soy, and diary. My grotesque stomach bloat and the need to call into work (due to pain) stopped almost immediately. However, constipation has remained and I still get gassy and a little bloated from time to time. in the last 3 months (this started before the elinination diet), I noticed a sort of bloat around my eyes and cheek bones Subtle but there and it's gotten a bit worse. This dispite very regular exercise and an incredibly clean low cal diet (it's typical for me to drop weight quickly so the fact that i'm gaining is indeed worth noting)

i recently added in gluten again so I can be tested. basically I want an official diagnosis b/c If I dont have it, then my docs and I will search for some other explanation. If i do have it, it might make it easier to treat? I dunno.

Question: forgive my ignorance - what do you mean by "Floaters" are you referring to poop? I have that as well - is that a sympton of anything?

Also-another question: I have started adding gluten back in for the last 3days or so. My grosteque bloating/symptons HAVE NOT come back - does this mean celiac/gluten is not my problem? All i have noticed is that my gassiness/bloat as increased some since i was on the elimination diet, but the grotesque extreme pain has not returned. i did notice oily stool the other morning though

thanks!

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I used to have parrots. I got too allergic and had to find them a new home. My birds were pretty flexible about food though, probably because I gave them "people food" so often. Sometimes they gave that suspicious look to a new food or threw it in the bottom of the cage, but eating some in front of them usually helped. If one bird decided something was good, the other would follow.

Will your birds eat warm food? As well as Harrison's pellets and Nutriberries (alas, both have gluten), I cooked food for them. All the mixes I see online for cooking have gluten grains or pasta, but it would be super easy to make your own mix of non-gluten grains, beans or split peas, rice pasta, nuts, hulled seeds, and dried fruit to cook. If it tasted OK to me, my birds would usually go for it. In fact, I can remember some food mixes that were tasty enough that I'd eat a dish of it too. :lol: The birds loved a dish of warm, cooked food and would eat it in preference to the pellets I always had in their cages.

This sort of food is much healthier than pellets as long as you supplement calcium. You cook the grain and legume mix, add the fruit partway through, and mix in the seeds and nuts at the end. Then add a bag of frozen veggie mix (peas, carrots, beans, corn) to cool it down and a scoop of bird vitamins with calcium. Get the birds used to a shifting mix of foods in their "warm food" dish so you can offer them a wide variety of foods in the cooked mix for better nutrition.

I used to make a big batch and freeze enough for a couple days in a baggie. I warmed it in the microwave to feed the birds in the morning - warm, not hot - and added fresh fruit or a bit of hard boiled egg if I had some around. You want to take the warm out of the cage after the birds have eaten their fill, as it will grow bacteria.

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Thanks Skylark,

Yes, giving them all gluten-free seeds, legumes, rice, friuts, veggies, etc., now. I am currently in the removing-gluten-dust-out-of-the-house-hell, which I am sure accounts for my bad attitude. Grumpy would be putting it lightly.

The one little blind lovebird is sad, and keeps looking in his bowl for the barley pellets. :-(

But if I have to do it, so do they. They are just used to eating it, but there are no wheatfields in the rainforest, I am sure.

My DH has flared up with this cleaning effort, but hopefully that will go away. Good thing about the weather, because at least it is spring cleaning time and not winter; I can open the windows, clean cages outside, etc.

May I ask, if you could give ur birds gluten-free food too, why did you have to let them go?

Thanks so much for being here...my daughter's upset with me for talking about gluten so much (my cousins call it "Celiac-yak-yak") and today she accused me of wanting to be sick....OMG.

Kids!

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I developed respiratory allergies to the powder down after a few years. I couldn't handle one of the birds without sneezing at least part of the time, and the sneezes absolutely panicked the poor bird. She was getting reluctant to come out of her cage and becoming very hard to handle. I was getting sick from the allergies so it was a bad situation for both of us.

Poor little lovebird. I wonder if he wouldn't enjoy a few of the Roudybush rice pellets; just not enough so that it's all he's eating. I agree with you that it doesn't look like a suitable long-term diet for parrots.

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