• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

I'm Seriously Depressed!
0

Rate this topic

13 posts in this topic

Recommended Posts

We got the blood tests back on my 21 month old baby boy on Friday and his Gliadin IgA was 51.1 (normal range being <25). We meet with the Ped Gastorenterologist (SP?) on next Tuesday but for now we are considering him to be Celiac. I don't know if we will do the biopsy or not. He has already had 3 surgeries, been hospitalized 4 times and had more blood draws than I can count. He is so incredibly traumatized. I just don't know.

I already got the Kids with Celiac book and I've been reading it. I've written a letter to give to all of the adults who help with Joshwa and just those that love him to explain what he can and can't have. I have this happy persona on that I'm so glad that we have a reason, it's only diet, no drugs or anything, blah blah blah blah blah. I'm so heartbroken.

At first, I was happy. I did think all those things. Now I can't stop thinking about the loss. My husband was trying to make light of the subject yesterday (as husband's often do) and joked that on Joshwa's first date he'll take the girl to the restaurant, have her order off the menu and will have brought his own food. That just crushed me. The fact that he can't lick an envelope (not that it's the funnest thing ever), for some reason, devistates me.

What's wrong with me? Why can't I look at the positive about this? Are these normal feelings or am I just losing it?

-Jessie

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Jessie:

No - those are all normal feelings. I am 28, diagnosed at 2 with Celiac and unfortunately I think I have passed it on to one of my sons - who is 3 and getting ready to be tested. My 4 yr old doesn't show any signs of it and I'm hoping never does. I'm depressed and feel so bad that I may be the one responsible for giving it to my son. It is not easy being a celiac but yes the bright side of it is that it is JUST diet maintaining.

Believe me, now versus 25 yrs ago when i was first diagnosed - there are so many foods out there replacing those we can't eat. Be a great mother like my mom was for me - in buying rice flour,etc. to bake me my birthday cakes, etc. She also made homemade soups, cookies, pizza crust, that I could eat. The entire family ate a lot of the stuff, like the rice/corn pastas and never knew the difference. It also saved her time in having to fix two different types of dinners each night. I'll be honest, as a child with Celiac and now an adult and having a child with it, it is not easy. But getting much easier. You can order foods, ingredients on-line and/or purchase them at food stores such as Wild Oats, Whole Foods and even my local grocery store has a few things.

An adjustment to your life is all that it is. Hang in there. You will get through it. And look at it this way, your son is young - he doesn't really know any better yet. The toughest for me was that I had never tasted a cookie, piece of cake, pasta, piece of pizza, bun off of a hamburger, etc. and then when I turned 13-14 yrs old - I rebelled and started eating everything! Now I am back on the gluten-free diet - 1 week now - and struggling to stay on the diet. If your son does have gluten-free, stress to him while growing up to stay on the diet, and find alternatives for him to eat.

Good luck. This site and message board is great for information, suggestions, and most of all SUPPORT. hang in there.

Tammy

Share this post


Link to post
Share on other sites

((hugs)) jessie. No, I don't think you're losing it. :-) You've had your expectations shot down, and it's a loss. (There was a post on here a while back about the process of grieving for loss - even the loss of being able to eat gluten. It's really true. A loss is a loss, and you're going to miss it, and grieve it.)

I think that one of the things that can make it harder, if you haven't gone through something very similar, is that your assumptions and expectations are dashed and tossed out into the gutter, but they've not been replaced by anything else. The expectation that he can't pick up a box of Kraft Mac n' Cheese from anywhere, and have dinner, is gone, but not yet replaced by the expectation that he'll have a kitchen full of healthy foods and be able to whip up a nutritious, gluten-free meal in just about the same amount of time, but tasting a lot better, isn't in place yet.

It's easy to focus on the "can't"s in life, but there are a lot of "can"s as well here, and it takes some time to adjust, and realize that some of the things you took for granted and never thought about before are "can't"s, but there are just as many (no, more) things that you took for granted and never thought about before that are "can"s.

It's ok to be sad, to be upset, heck, to have a bit of that angry "Why me?" (or "Why him?") feeling. With time, I think, you'll adapt to the situation and it won't be so bad any longer.

Share this post


Link to post
Share on other sites

Hello,

i feel the exact same way. i am thinking of all the food she can't eat, the extra work i have to do, kissing her spouse who just had a slice of pizza.

I think it is a normal part of the process. my daughter was 2 when she was diagnosed with food allergies to chicken , eggs, food perservatives and wheat. It was a tough few months before i could even cook something without getting depressed. but now it is routine. the separate plates the separate meal planning.

NOw at age 6 she is being tested for celiac which will remove MORE stuff off her eatable list . I am now going through the depression stage again. But i know as soon as i pulll myself together and vent it out and get some help from people like you , that can feel the same feeling, i will be ok. Then i will get my action plan together and my daughter will know that things are under control. they need to feel that we are under control. though i feel i don't know what i am doing but i am trying my bests to come up with a HEALTHY meal once a day!!!!

ANy suggestion from out there will be helpful. :unsure:

sarah naser

Share this post


Link to post
Share on other sites
Guest jhmom

Hi Jessie: :D

I am recently diagnosed (Sept 03) along with my daughter. I don't think I have grieved yet and I hope I don't go through that but I am sure it's normal to feel that way. I think after being sick for so long I was just so relieved to find out what was wrong with me and looked forward to feeling better. Of course I do crave some of the "normal" food I use to eat and I have thought about cheating but then quickly remember the pain I felt and the craving leaves!!!!

The one good thing for your son is since he is so young he will never know the difference in what he once could have and what he can have now. My 8 year-old daughter struggled at first and cheated a few times while at school until she got very ill and then I guess she finally realized what made her so sick and she has not cheated since! :D

It will get easier and become second nature, try not to think about the negative just be happy that you have found out what is wrong with your precious baby boy and that this disease is controlled with a diet and not meds, surgery, etc.... :D

Keep your chin up you are doing a GREAT job mom!!!!

Share this post


Link to post
Share on other sites
Ads by Google:


Hi Jessie,

Your not alone with your feelings; my daughter who is five was diagonised last month so I went to the health food store and bought a bunch of gluten free products (it cost me a bundle) needless to say she didn't care for any of it. Talk about grieving theres not a day that I dont cry for her. This week I feel much better I went to "the shopping and food forum" there you will find a list of mainstream gluten-free foods, you will be surprised with some of the foods your little one can still eat I know I was.

Hillary

Share this post


Link to post
Share on other sites

Thanks everyone for all the kind thoughts and words. I'm doing a little bit better today. It's just so hard to think about the bad stuff. I'm arming myself with education and going from there. Taking it one step at a time, you know?

Share this post


Link to post
Share on other sites


Ads by Google:


I understand how you are feeling. I have been really stressed lately about not being able to do 'normal stuff' without a great deal of effort. I am trying to focus on ways to make our new lifestyle simpler and more comfortable. My sons and I have been recently diagnosed. My boys are 2 of my triplets, and their sisiter does not have any symptoms and has not been tested.

My son who is handling things the best, has seen a big relief from his pain after going gluten-free, so it seems to be easier for him. He has had 32 surgeries, had 3/4 of his intestines removed, many hospitalizations, chronic pain and nausea, many many specialists and chronic ongoing growth and nutrition issues, besides the celiac. I am really trying not to stress over the challenges, but look at the positives for him especially. My other son is having a lot more trouble accepting the diagnosis, because his symtoms are a lot less tangible, and so he doesn't see a big difference.

If you can, try and focus on the health benefits, and the fact that he doesn't 'know any better'. If he doesn't know what he is 'missing' then hopefully it will be much easier on him.

I think what you are feeling is normal, but acceptance will feel normal soon too :D

Here's a poem, that a friend gave me when my son was so ill in the hospital as a newborn.

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I don't know if it exactly fits your situation, or others diagnosed w/ celiac, but it helps to see things a new way.

Share this post


Link to post
Share on other sites

Wow, that is so awesome. Thank you for that. It really made perfect sense to me.

You have quite a story. I'm sure that I'll pick your brain more often!

Thanks again,

Jessie

Share this post


Link to post
Share on other sites

Joshwa will just have to take his first date to Outback steakhouse hehe they have gluten free stuff on their menu.. check out their web site.. and he can also take her to DQ and share a nice dish of soft serve or a blizzard.. or a DQ cake special ordered without the cookie crunch in the middle! there are several places that have gluten-free items..you just have to look around.

There is also a Yahoo group called Celiackids and Dana Korn the author of the book you got is an active member.

It's another resourse for you!

Welcome!

Denise

Share this post


Link to post
Share on other sites


Ads by Google:


Hi jessie

I totally understand how you feel! I think it is completely normal.

My daughter was diagnosed in Dec. through a blood test. She just turned 2. I was pretty devastated at first, and cried the whole day when i found out. My 6 week old son was in the hospital at the time so it was pretty stressful.

After the first day though i felt relieved because we finally knew what was wrong with her and knew what we needed to do to make her healthy. Also she could have been diagnosed with something much worse!

She also has been traumatized by tests and doctors and I was having such anxiety about her having the biopsy done. She had it in the first week of Feb. and it went much smoother than i had anticipated.

My husband reacts just like yours. He thought I was crazy when I got teary eyed in the grocery store looking at all the foods she can't have.

Like the other posters said there is really so much information and products available. It certainly will mean some changes in your lives. I feel heart heavy when I look at her, but i take great joy in seeing the happy child she has become since we have made changes in her diet.

So stay strong! it will get easier and easier every day.

Maria

Share this post


Link to post
Share on other sites

Hi Jessie, I'm a 59 year old retired school teacher and have had Celiac since age 8, when no one even knew what it was or what to do about the symptoms. My asthma was the only way I could monitor what the foods were doing.

Now I am a person who runs circles around others, even younger people, with all the energy I have. I only need a few hours sleep, and I have so many projects going that no one else even has an inkling that I am so busy.

The key to getting well was eliminating everything from my diet except meats, fruits, and vegetables, then adding one food at a time to see if I would wheeze. It would take 15 minutes to know. Now I have learned the importance of knowing exactly what I am putting in my mouth. I read each and every label and ingredient on anything I eat or use as part of a recipe.

In addition to wheat and all other grains, I am also allergic to milk, dairy, butter, chocolate, casein, whey, egg whites, and yeast. That makes sense because butter, chocolate, casein and whey all come from milk.

Here is the exciting part. We are on the forefront of a new revolution in health. So many people are being diagnosed each day, that whatever we learn we can pass on. We have been chosen to be part of something that most people don't understand, and everything we can learn about Celiac will help someone else.

My new grandson has Celiac. I keep him 5 days a week and was there to help discover his allergies to milk and dairy at just a couple of weeks of age. Another family member has just been diagnosed. It makes sense that my job now is to help lead these family members through the maze and out to the other end, and that we will all feel better once we have eliminated the poisons that cause disease.

I wish you lots of strength, good success at sticking to your diet, the ability to learn a little more each and every day, and the courage to stick your hand out to someone and say, "I have Celiac too--let me help you with what I have learned."

It may be the best thing they have heard all day. Always, Welda

Share this post


Link to post
Share on other sites

Try and keep your chin up.

A Gliadin IGa positive does not constitute a Celiac diagnosis. I am Iga Pos and so is one of my sons neither of us are Celiac. Did they test his Ttg level this is far more appropriate for diagnosis.

Also the biopsy is far better that just this test to tell. I say be 100% sure before making major lifestyle changes. Also he should not go Gluten free until all the tests are done as it will effect the results.

I went through the greiving when Grace was diagnosed (by very Pos biopsy in Sept 03) and I still have crappy days. But hey she is so much healthier and happier it far out weighs me feeling sorry and sad.

Good luck with the further testing.

Cheers

Wendy

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
      108,140
    • Total Posts
      939,876
  • Member Statistics

    • Total Members
      66,129
    • Most Online
      3,093

    Newest Member
    Serah
    Joined
  • Popular Now

  • Topics

  • Posts

    • Positive biopsy and blood work?  It sure sounds like your doctor made the right diagnosis.   Let me tell you my story.  Diagnosed after going for a routine colonoscopy because I am over 50.  GI saw my chart and noted that I was anemic.  I have a genetic anemia and I was iron deficient as well.  I lived like that my entire life.  But my wise GI ordered a celiac blood panel and it was considered mildly positive.  So, he ordered an endoscopy to my colonoscopy.   I had been dairy free since I was young.  Was told that I had an allergy.  I had not any GI issues with gluten.   I was an avid baker.  I had nut issues and also mushroom, garlic/onion, and egg intolerances.  I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.   I was shocked.  My husband had been gluten free for 12 years prior to my diagnosis.  There is no way both of us would have gluten issues.  But...the tests did not lie.  My iron deficiency anemia resolved within months of my going gluten free.  Two months into the diagnosis, I fractured my back doing NOTHING!  I have osteoporosis as a results of having celiac disease.   Grief is completely understandable.  Denial is a part of grieving.  But the proof will be in follow-up blood tests and how you feel.   So, now I can eat nuts (not almonds), eggs (two a day every single)  and dairy.  Yes, ice cream!  I have yet to get back garlic and mushrooms, but I can live with that.   I have Hashimoto’s too.  .  Once you have one autoimmune disorder, you can develop more.  The gluten-free diet may help, not only your celiac disease, but your UC issues as well.   Try the diet.  I think you will be pleasantly surprised!  
    • Hi Sofie! Listen to KarenG.   We both had iron deficiency anemia when we were diagnosed.  Plus, I have Thalassemia which is a genetic anemia on top of the iron deficiency anemia.   Dumping iron into your system is not the solution.  You need to be seriously gluten free.  You are probably unknowingly damaging other parts of your body....like your bones.  Two months after my diagnosis, I fractured my back doing NOTHING!  Think you are just not getting enough oxygen to your brain?  Think again!  It is probably related to celiac disease.  Celiac disease is systemic.  It is not just about villi damage.   But why am I telling a college student this?   You should be researching your autoimmune illness and ensuring that you do not develop Cancer (rare) or another autoimmune disorder like lupus, diabetes, thyroiditis, MS, Crohn’s, or one of the almost 100 other Autoimmune disorders (common).    Get your antibodies down.  Your mild anemia is the least of your problems.  Raising  your ferritin level may help a little, but healing from celiac disease will help you a lot more!    
    • Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac. I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem.  I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.
    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
  • Upcoming Events