Trying To Deal But I Just Don't Know What To Do Anymore

[Jade Pray]

Hi, My names Jade and I have been a member of this forum for several months but this is my first post. Honestly I'm not fond of forums but there are no support groups I've found anywhere close to where I live. I’m not sure if this post is in the right place but I don’t know where else to post it so I apologize if it’s misplaced.

In May 2011 my doctor said I might have some problems with gluten and put me on a diet to see how it worked. I couldn't stand the diet and refused to be on it unless I had to. So she did a blood test and told me I had celiac. I did research which said the blood test is not 100% definite so I went to a gastroenterologist who put me back on a gluten diet for 2 weeks then biopsied my intestines. About a month later the results came back in and I was diagnosed with Celiac. Which is a disease most of my family wont accept as a real health problem. For a week I went catatonic and barely ate. Everyone of course got pissed at me for being unreasonable and told me its not that bad and to stop whining about it when I could have something so much worse than this. I started seeing a nutritionist but I only saw her a couple times because it’s not covered by my insurance. She was not very helpful though, she gave me a few websites, told me a little bit about celiac than told me I’m too picky an eater and to just shut up and eat the food. For a long time I kept finding out that stuff I was eating thinking it was safe wasn’t and kept having to readjust my diet.

Since then I have come to accept my disease and my diet. I have begun experimenting in the kitchen and making gluten recipes into gluten free recipes. And other than some accidental glutenings here and there I have been on a strict gluten free diet for almost a year at least.

And yet I still have symptoms on a Daily basis. By now I have completely lost faith in doctors. I haven’t met any that know much at all about celiac and most of the time they just want your money. I also at this point do not have insurance and can barely afford a gluten free loaf of bread let alone a doctor’s visit. But my mom has decided to be a hypochondriac for me and has decided I must have something else. So she offered to pay for a doctor’s visit and a bunch of blood tests. The appointment went mostly good. She used the word allergy….. But she agreed there might be something else here and said she would “look into it” and signed me up for all kinds of blood work…. Couple days later I get a call saying my blood work came back fine other than I have low vitamin d and should start taking vitamin d supplements and there’s no need to make another appointment. That’s it. No idea what low vitamin d does (until I looked it up online of course) and no indication from her as to how low it was. Got the outrageously large bill the next day (kind of wish they had sent the actually results with it but I intend to call and request those Monday)

Here’s a list of all the tests: Triiodothyronine (t3), vitamin D, comprehensive metabolic panel, thyroid stimulating hormone, thyroxine (t4), CBC W/ auto differential, iron, transferring, vitamin B12, and folate

Needless to say, I feel terrible, I hate doctors, I’m incredibly broke and stressed, and I just don’t know what to do anymore. I’m not completely certain what the point of this post is and I apologize for rambling. But I need to make myself post something once so I can start actually posting on forums because there is no where else I can go.

[Skysmom03]

Vitamin D goes with milk... And many Celiacs have trouble with this and have to take a supplement. Do you take any multivitamins? If not you should, because you are missing out on a lot of vitamins on the diet. Bone health is a major concern of Celiacs ( vitamin D).

Maybe you should share the what ifs with your family. They probably feel it is not real because there is no medication. But they don't realize that a little crumb is all it takes to harm your intestines. Show them how easy it is to cross contaminate your food. Show them the list of symptoms one can have from being a celiac and most importantly show them what can happen if it is not treated! And on a side note.... You got this from somewhere.... Most likely from your parents....this is a genetic disease. They need to be tested themselves. This includes brothers and sisters and aunts and uncles too! My husband was diagnosed with it first and then we tested my son at the suggestion of a dr ( because of hubs) and he also has it ( three years worth of damage at least and absolutely no ' noticable' symptoms). Keep at the diet. Don't give up. Don't let your family make you feel bad. This is your life and you have to live it.

And if bread is an issue, get a bread maker or just cut bread out all together. We rarely have bread in our house. When we do we use UDIS.

Oh and did you know you can deduct your gluten free food ( and travel to get it) on your income taxes? You have to keep receipts, but basically if you buy hotdog buns for 5.00 and regular ones cost 2.00 you can count 3.00 on your taxes. And if you have to travel 30 miles to get it you can also count that milage as well. All the receipts are a pain but may be worth it. Google it. I am going to do this as well this year. I am just going to keep a huge list and every receipt.

Good luck- it will all work out. Don't get tok frustrated.

[kareng]

Perhaps if you showed them some info from " real" medical centers about Celiac? Google "Celiac centers" . The Univ of Chicago has a lot of easy to read info on its site, but there are others - Mayo, Columbia, Maryland, etc. maybe when they see that, they will realize it is a real disease.

[1desperateladysaved]

Sorry, you are in a some tough spots. I don't know how you can solve it all. I would just encourage you to stay on the right path and keep walking.

Diana

[Chaff]

Hm...well you likely either have lingering intestinal damage or some food intolerances. If you have damage still, you could try some digestive enzymes and probiotics, like the ones in the Newbie 101 thread, if you haven't already. If you have food intolerances, you could keep a food diary to try to identify them. It sucks, I know.

Can you identify a few simple things you can definitely eat? It helps to have some totally safe foods you can trust in while you sort all this out.

I definitely second going to a real celiac center. Maryland is closing this month (moving to Massachusetts), but Mayo sounds great if you can make the trip.

[Takala]

Okay, so today is day one of your new life. Go to the store, and buy some gluten free food, and start eating it.

Hon, sometimes walking is just learning to swing that one foot you can't feel in front of the other which is supporting your weight.

You may have additional sensitivities. You may have to experiment to find them, by eliminating certain things one by one for a period of time. For example, I have found out that I am one of the few people on the planet who can't do flax, and the stuff is in an awful lot of gluten free foods. I also am sensitive to gluten-free oat cross contamination. There was a great deal of trial and error there during that experiment. Other people react to things like soy flours. Or they are eating corn that is cross contaminated. (experiment by taking out corn, waiting a week, then adding in an ear of fresh corn you shucked yourself before cooking). I was using a cc'd brand of buckwheat, I had to change that. You may want to experiment with almond flours from a source that processes only almonds, or grind your own in a clean blender. Cross contamination is a big problem for some of us. Once we figure it out, it's like a whole new world out there. Eat as little processed food as possible, and check out the "super- sensitive" part of the forum for some ideas.

Low Vitamin D, so, go to the store, or online, and select a gluten free vitamin D and calcium and magnesium supplement. Also, take a gluten free B complex or a gluten free multivitamin with a high level of B vitamins. All these vitamins and minerals interact, and you will feel much perkier on them. This is the time of year that many people have to fight the lack of natural sunlight and short days, and make themselves get out and do anything. Really, it seems half the country needs the vitamin D supplements, but the other half should go for a walk or something else outdoors.

In the future, never let the idiots bother to run a thyroid panel on you UNLESS they run it not only for the thyroid levels T3 , T4, TSH, whatnot, but for the THYROID ANTIBODIES which could indicate auto immune thyroid disease. This is how doctor's rip you off all the time, if you have the antibodies indicating your body is going after itself, you still can have "normal" thyroid levels and it is missed. And you have to tell them that you need this test because otherwise, they won't bother to run it when they scrawl down "complete blood panel."

[shadowicewolf]

We've all been there. Just keep putting one foot forward. It will get easier

[Gemini]

Oh and did you know you can deduct your gluten free food ( and travel to get it) on your income taxes? You have to keep receipts, but basically if you buy hotdog buns for 5.00 and regular ones cost 2.00 you can count 3.00 on your taxes. And if you have to travel 30 miles to get it you can also count that milage as well. All the receipts are a pain but may be worth it. Google it. I am going to do this as well this year. I am just going to keep a huge list and every receipt.

Good luck- it will all work out. Don't get tok frustrated.

If you are in the US, deductions have to tally up to 7 1/2% of your adjusted income to qualify for a deduction and it's going up to 10% this coming year, as part of the tax increases we are going to be paying. Unless you have surgery and pay for it out of pocket, the vast majority of people will not be able to deduct gluten-free food or mileage. You may be able to deduct trips to doctors offices but not travel to buy food.

Also, some people have been audited by the IRS after trying to deduct food......even for medical reasons. Celiac's get no breaks on anything, it seems!

[Jade Pray]

Thank you guys so much for responding. It’s so amazing to post and actually get a response. And honestly I have never been able to talk to another celiac before.

I have not been taking multivitamins. I have a couple vitamins in the cupboard (and I have started taking the Vitamin D since I got the results) but I have never regularly taken vitamins for several reason, 1. I was once told that if you take them to often it’s not good. 2. I have never known what to take and no doctor has been able to suggest anything. 3. They are so expensive I don’t see how I could ever afford to buy them very often at all

I have never actually tried digestive enzymes or probiotics. I have never thought of them, I don’t really know what they are or anything. I will read the post in the newbie 101 thread though. I do suspect that there’s still damage in the intestines but I keep reading all these posts and articles from celiac’s saying how much better they got after going gluten free. I just don’t understand why I’m not better yet. My doctors never did tell me how damaged my intestines were when I was diagnosed (not sure whether or not they can tell..) I started a food diary… but I just started it Monday so it will be a bit before there’s enough information for it to be helpful. Unless a miracle happens and I suddenly become rich I will definitely not be able to go to a celiac center. I moved to Great Falls in February and I still haven’t been able to save up enough money to drive the 170 miles to Missoula to pick up the rest of my belongings.

You guys posted such helpful suggestions. I just don’t understand how anyone can afford all of that.

[shadowicewolf]

Thank you guys so much for responding. It’s so amazing to post and actually get a response. And honestly I have never been able to talk to another celiac before.

I have not been taking multivitamins. I have a couple vitamins in the cupboard (and I have started taking the Vitamin D since I got the results) but I have never regularly taken vitamins for several reason, 1. I was once told that if you take them to often it’s not good. 2. I have never known what to take and no doctor has been able to suggest anything. 3. They are so expensive I don’t see how I could ever afford to buy them very often at all

I have never actually tried digestive enzymes or probiotics. I have never thought of them, I don’t really know what they are or anything. I will read the post in the newbie 101 thread though. I do suspect that there’s still damage in the intestines but I keep reading all these posts and articles from celiac’s saying how much better they got after going gluten free. I just don’t understand why I’m not better yet. My doctors never did tell me how damaged my intestines were when I was diagnosed (not sure whether or not they can tell..) I started a food diary… but I just started it Monday so it will be a bit before there’s enough information for it to be helpful. Unless a miracle happens and I suddenly become rich I will definitely not be able to go to a celiac center. I moved to Great Falls in February and I still haven’t been able to save up enough money to drive the 170 miles to Missoula to pick up the rest of my belongings.

You guys posted such helpful suggestions. I just don’t understand how anyone can afford all of that.

Oh thats a long drive, I've done that trip before.

I don't really spend all to much on gluten free stuff. My main bigges are my pasta, corn tortillas, and my chex. On occasion i'll pick up a flour or something of that sort.

[MitziG]

I missed whether you said if you live alone- but if you are in a shared household you are getting cross contamination and that will hinder your progress severely. Every miniscule molecule of gluten that you are exposed to will trigger an immune response in your body, so if you are living with others, it is time for serious changes. You need your own cutting board, your own toaster....basically all of your own storageb cookware. If you can't afford to buy new than line pans with tin foil and use plastic baggies for storage. Wooden and rubber spatulas/ spoons, etc MUST be replaced. But at least they are cheap. Any vitamins or meds you take must be gluten free. Cosmetics aren't a HUGE issue for most of us (other than lipstick/ chapstick) but haNd lotion and shampoo/ conditioner easily get into your mouth so should be gluten free.

If you aren't improving, continued exposure is the #1 likelihood. I think you said its been a year- you should definitely be noticing SOME improvement by now, but be warned, it can take a long time to really feel good. It was 7-8 mos before I noticed any improvement- almost 2 years later though I am a different person. But it is discouraging when you read of people who instAntly feel better without gluten!

Now, if you are positive that you aren't getting cross contaminated, then it is likely you have another food issue. For celiacs...it is often dairy. The protein in milk and gluten have similar structures and our bodies can mistaKe one for another. So try removing all sources of milk from your diet (remember to read your labels) you may find that brings you relief. Those are my first suggestions- there are many things to try but no sense getting overwhelmed when there may be a simple answer!

[Madagascar]

i'd try taking the digestive enzymes. they keep me alive! i also take lactase enzymes, which are in probiotics, too. the one i like you take once a day - Schiff's Digestive Advantage Lactose Defense formula. they're available in drug stores everywhere.

if you are depressed, taking vitamins, fish oil and vitamin D is essential. if you have damage to your intestines from the celiac disease, you can be malnourished. if you are not only depressed, but also have insomnia, you may not be absorbing tryptophans, which form the basis for your body to make serotonin and melatonin. serotonin is your "i'm happy, i'm not anxious or depressed" hormone, melatonin is your "i fall asleep normally and sleep all night" hormone. they are directly related to tryptophans. i take 5HTP for that and sleep like a baby. my son had anxiety attacks and insomnia and both resolved with a nightly 5HTP. i buy mine here: Open Original Shared Link

i've been taking all of these every day for years. there's no downside that i know of and i think they've kept me feeling good and eating ok in spite of having undiagnosed celiac disease for the past 40ish years.

[Chaff]

It's expensive in terms of money, but cheap in terms of not feeling like crap all the time. But that still costs money.

The problem is that there is a lot of trial and error. What particular formula of supplement works for one person may not work for another. Very frustrating.

There are some cheap solutions, but I'm not a fan of them. People go on the GAPS and SCD diets. Google them and see what you think. They're cheaper but a little more work. A lot of people here swear by them, though, so that may be the ticket for you.

You could also just identify a few foods that you know are safe and then ferment your own probiotics to add into your diet. If you can handle yogurt, bam -- get some of that extra fortified yogurt Jamie Lee Lewis advertises. If you can't, you can make some kefir in coconut milk or even just water. Search around on the boards for kefir recipes or PM me if you want a recipe.

I'm inclined to try Celiact, a supplement someone mentioned on the boards before. It seems to have all the things you need in one package. But I haven't tried it yet, so I don't know if it's worth it. Seems cheaper than buying it all separately, though.

If you buy probiotics in pill form, but sure to get some that are either refrigerated or freeze-dried. Otherwise, they are likely to not be effective. Amazon has some good freeze-dried ones (my GI approved them) that are gluten free -- again, PM if you want more info on that one. It is already helping quite a bit.

I know it's a lot to learn at once, but I just googled around on this site every spare minute for days, read all kinds of things at pubmed and NIH on celiac, and eventually it started to make some kind of sense. It's all highly technical, I don't really understand it at a biochemistry level or anything, but I get that my insides are torn up, I need help digesting food right now, and I likely have an imbalance of bad bacteria in my gut and a deficiency in key vitamins and minerals. Meanwhile, my body is still attacking my body, because the antibodies I create in response to gluten are floating around in my system for months after I go gluten-free.

When the antibodies get out of my system altogether, then I have a chance at healing up. The rest of it seems to be a way to give my body a leg-up in the meantime. And I'm all for that.