Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Trying To Deal But I Just Don't Know What To Do Anymore
0

13 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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."

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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! <_<

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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: http://www.pureformulas.com/5hydroxytryptophan-90-vegetarian-capsules-by-thorne-research.html

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,645
    • Total Posts
      918,443
  • Topics

  • Posts

    • How effective is HD skin biopsy after being gluten free for a year
      Looks like you got some good info from previous posters.   I don't understand why you and your doctor think that dairy contains gluten?  Lactose is a sugar not a protein like gluten.  I think you have some other issues.  
    • Question on posting
      I made an informative video for Celiac Awareness Month that demonstrates how small 20ppm is. Am I allowed to post a vimeo link? Thanks!
    • Celiac Awareness on NBC Nightly News
      http://www.nbcnews.com/nightly-news/video/celiac-disease-affecting-millions-of-americans-often-goes-undiagnosed-692131907739   This was on last Tuesday. So happy that a popular national news program is spreading good information!
    • The US Preventative Services Task Force needs our help - tell them why Celiac screening is important!
      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • Celiac.com: Full month of educational opportunities planned at library
      He will also be offering free Tai Chi classes at WCPL every Tuesday, ... the varied symptoms of Celiac disease and the necessity to follow a gluten-free ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,738
    • Most Online
      1,763

    Newest Member
    Ladywolf
    Joined