• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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?  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!

Rate 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?


Share this post

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


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.


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


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.


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

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,


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!



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.


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.



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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Chris Smiles
  • Popular Now

  • Topics

  • Posts

    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.

      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
  • Upcoming Events