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

Celiac W/ Trouble Working
0

6 posts in this topic

Hi there everyone, I not only want to add my post but I want to introduce myself. My name is Heather and I have celiac.

Its been a long road to get where I am but I still am not with a full recovery. Are we ever? I have had these food problems for as long as I can remember. It started with being lactose intolerant...

Then when I became pregnant with my daughter in 2001 I began having every pain you could imagine. i thought it was merely due to my pregnancy but boy was I wrong. I was not on a gluten-free diet since I did not know I had anything, except for my previously diagnosed IBS...

After having my daughter it got worse and worse. I have studied a lot about celiac, enough to make your eyes pop out and I have every symptom. My doctor sent me to a dietition saying I just was eating lactose and needed to get on a more structured diet eventhough I knew I hadn't touched a drop!

I told my issues to the dietition and she said it was the prime of Celiac and to begin a gluten-free diet... I then began a gluten-free diet which helped greatly!

I went to my doctor and she did a blood test and she said it was Negative even though I told her it would be negative if I was on a gluten-free diet. She insisted that it would be positive. What does she know! apparently not much since it is common to get a neg. result on a blood test when your on a gluten-free diet.

Anyway, long story short... here I am today, a mother struggling with my daughter, paying bills and what not. I cant handle all the pains I still have. I feel as though i can't live a normal life to the fullest.. things are better than in the begining but i still get these anxieties that make me flip over nothing anf irritibilities.. Thank god i have a supportive boyfriend otherwise i have no idea what Id do. I am trying to make a life for us but keeping a job is impossible.

I still have a lot of pains often. I am not only allergic to wheat but eggs, soy, dairy, nuts, and corn. Gee, lucky me huh! lol. It makes it hard to cook, go out (ha whats that) and just all out makes me real bummed! I am really wanting to work and make a better life for us but how am I supposed to keep a job with this problem and how do I make it so people (mainly doctors and workers) understand and want to help. My doctor is a schmuck.... I dont know what to do!!!!!!!!! I have gone through 7 jobs since my daughter was born, not even 3 years ago and for most of the time i was unemployed. I need to do something... Are we able to get disability with celiac? I cant keep losing jobs and falling back into the system. Im not like this, i want to make things better!

Any suggestions on any od this????

0

Share this post


Link to post
Share on other sites


Ads by Google:

Celiac isn't considered a dibilitating disease, and you won't get any kind of aid (that I know of) just because of celiac, even if you were biopsy proven. That's the bad news....

The good news is, that no matter what disease you may or may not have, you may still be elligible for state/federal assistance and medicaid, that at least would help with the $$ situation, and the medicaid might help you find a more open minded doctor. WIC (women infants and children) gives assistance based on financial need and I bet you are a prime canidate for that. You don't get cash, but they do provide you with staple foods like milk, cheese, beans, cereals, etc. I know you are lactose intolerant, but this saves you from having to buy milk for your daughter. Every city has a website that will lead you to state assistance, so you should do a search and see what you can find in your area.

Hope this helps a little! Good Luck!

0

Share this post


Link to post
Share on other sites

Heather,

I know what you mean when you say that it is so hard to work with Celiac. When we are first healing there are so many things to think about, and taking care of a child takes up most of one's time. I've had Celiac for 51 years now, not knowing most of that time what was causing my problems.

The information about getting public assistance is so helpful, and I hope you will take that route and find some help. There is something else going on here, I believe. Having to work forces one to get up and out each and every day, and forces us to open our eyes to what is going on around us.

There are lots of people around who don't want to work, but thank God that is not the way you are. I think that being a role model for your child would make you feel so good, and becoming totally independent and responsible can only add to your healing. It is so good that you have supportive friends. Do you also have family members who have been diagnosed with Celiac, or are you the first to learn you have the disease? Does your child have Celiac?

I remember thinking that I was caught in a maze when I first tried to work with the health problems that Celiac presents. However, being a single mom meant that my choices were: work or work. There is something about the structure involved in having to look for job openings, put ourselves out there for job interviews, get up and going each and every day, deal with the many personalities we encounter on the job, and learn to deal with our money in a grown-up, responsible way.

Heather, I'm thinking that you will find that this whole process looks overwhelming when you contemplate it in one big chunk, but that when you break it down into little pieces, you will find that you are quite fit for the task.

Ask yourself this: What have I always wanted to do with my life? Today you are being presented the opportunity to answer that most important of questions, and to move, one step at a time, toward a future which is custom-fitted to suit you and your child. I reckon you will begin to feel better than ever after you start to envision what you want you and your child's future to be like. With God's help, you can be the master painter and designer of the future you desire for you both.

Best wishes as you move along this path of recovery. We will all be rooting for you and your child. Welda

0

Share this post


Link to post
Share on other sites

Its so nice having a forum.. just talking to you guys he;ps me so much already!

I was the 1st diagnosed person in my family.... My father raised me because me mom disappeared when I was very little so we didnt know when things went wrong if it could have been something that I got from her. My father did recon that she always had a gut ache though. We were completely clueless!!!! I was finally self diagnosed with the aide of a dietition since my doctors blood test was a neg and decided to stop there. I know what I feel and I know that a gluten-free diet makes things better. I have every symptom of celiac disease so who knowa maybe my doc is off her rocker. After all there is a high probability of a Neg. blood test when youre on a gluten-free diet. and I was.

Anyway, when my mother showed up in Nov. of 2001 she had kind of mentioned that she had stomach problems... She wont talk about it at all to me though besides she hurts a lot and so does her mother. They both sound to have celiac disease symptoms but I do not know if she has been diagnosed and to be honest, my mother has a lot of mental issues so sometimes I wonder if she even realizes what shes saying. I dont wanna ask eventhough I should because shes not all there mentally.

I am good friends with my half brother (same mom) since she showed back up in my life. He has stomach cancer and says that my mother does as well but doesnt want me to know because she doesnt want to hurt me since she was already gone for so long..... i dont want to bring it up because she doesnt like talking about it eventhough I really should know... But is this something that can be wrong with me? Everyone on my moms side of the family has gasterolintestional problems.... It terrifies me. Could I have cancer?

EEK!

Yes, as for workign, it is so difficult... Sometimes even just eating too much of one thing can really off my gut and Im in pain for days sometimes. Constipation and then explosive diarreah and goes again and again in a routine. Its horrible! Who knows...

Thats my life though.. I want to work, but its nearly impossible with everything thats wrong with me. I not only have celiac disease but I have Ovarian Cycsts, Cervical dysplasia, OCD and severe anxiety..... yadda yadda.. my list goes on and on... I just cant do it! I get increadbly overwhelmed and have multiple anxiety attacks.. that alone makes the pains worse. Does anyone else feel this way?????

0

Share this post


Link to post
Share on other sites

Hi SadiesMomma:

I worked in a very stressful environment for 3 1/2 years. Well during this time is when I began getting sick, well we all know boss' are, every time I was out sick (which was not that often) I would hear about it. I went to work for over a year in constant pain! I finally decided to quit my job last Sept. My mother in law had recently passed away and found out that the people I worked for got mad at me because I was out for a week. I finally had enought and decided that I did not need to work for them anymore and decided to resign. I felt such a peace about it and knew it was for the best, I needed to get better!

Since then I have thought about going back to work but my hubby wants me to get better first. I still have extreme fatigue and other problems which I am not sure is celiac disease related or not. My doc is checking me for other things too.

I do hope things work out for you, hang in there! :D

0

Share this post


Link to post
Share on other sites




Hi Sadies Mom :-)

I've been gluten-free since Feb last year...it does get better! :-)

I too suffered from sever anxiety as well as bipolar disorder. I was on medication for the anxiety and thought I'd end up having a stroke or a seizure from the worrying, anxiousness, stress, etc.

When I was diagnosed with celiac disease, I also found out I was allergic to TONS of other stuff. Rice, yeast, garlic, peppers (all), onions, lemons, limes, tomatoes, grapes, shellfish, some nuts, bananas, beans (most kinds), and potatoes as well as being lactose intolerant.

I was told that since I'd been so long suffering from celiac disease (11 years) that my body had developed secondary allergies. The dr said that once I'd been gluten-free for a period of time (varies from person to person) that most if not all of these allergies should go away. Let me tell you...trying to bake ANYTHING w/out rice or beans or potatoes as well as gluten...there's not much left! lol.

The Dr was right...the only allergies I have now are shellfish, garlic, onions, peppers. I can eat everything else! In addition, I have not had even one anxiety attack in over 6+ months and my BP behaviour/symptoms are completely gone. This from someone who was manic 90% of the time, and ALWAYS nervous/anxious/stressed/etc.

I guess what I'm trying to get to to is...it does get better! Our bodies become so ill from constant gluten exposure it can cause loads of secondary issues. Once a person is diagnosed and starts a gluten-free diet, the body can heal and most of these secondary issues go away.

Good luck and happy healing on your road to recovery! :-)

- Cherie

webgyrl.net

0

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
      104,132
    • Total Posts
      919,527
  • Topics

  • Posts

    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,168
    • Most Online
      1,763

    Newest Member
    Natalie1980!
    Joined