Celiac Is Ruining My Life !

[eborzecki]

I was diagnosed with Celiac a little over a week ago, after going to doctors for over 4 months asking why my hair has been falling out.

My blood tests came back positive for Celiac and my GI decided that since my sister has Celiac diagnosed through a biopsy there is no need for a endoscopy because either way he will tell me to go gluten free.

My husband is very supportive but doesn't seem to want to talk about this with me and I am tired of keeping everything in. I hate the fact that everything gluten free that I buy is so expensive, and being a stay at home mom of two kids and only having him work makes this even harder on me now.

My hair is falling out and although I lost 60lbs over the last 6 months I feel ugly because I barely have any hair and have to work hard on hiding the bold spots. I lost over 50% of my hair.

It seems that every time I want to talk about it he just brushed me off, he has this don't think about it, don't talk about it, and don't worry about it outlook on life. It's easy for him to say but for me I have to think about this constantly, and I am sick of it.

All I want to do is go out and have some pizza and Chinese and have the same hair I use to.

I hate that when I talk to him about getting clip in hair extensions he just brushes me off, I would rather have him tell me that we don't have the money, or that I can't or something instead of just ignoring me.

I didn't choose to have this, and I hate having it. Sometimes I wish I could make this all go away, my doctor told me that in order for my hair to grow I have to keep my TTG and IGA in normal levels as close to zero as possible, for my hair to even start about growing back and even then they might not grow back.

Why can't my husband just understand? My mom is of no help because she thinks I'm over reacting with this whole thing, and not only that my husband is upset when I tell someone I have Celiac when they ask over and over why I am not eating something, I mean what am I suppose to do.

How am I suppose to deal with all of this, it seems impossible, not only that but with the holidays and cross contamination I feel this is impossible, and there is no one that wants to talk to me or support me with this.

;( ;( ;( ;(

[AVR1962]

Sorry that you are having to deal with this. I do understand and I think you will find wonderful support here. You are right, you did not choose this and keep that in mind. Your husband is more than likely trying confused himself and rather than vocalize, his thoughts may be internalized. We expect our loved ones to be there for us and give us the support we need and get frustrated when it is not there. I think many here could share their own horror stories on this subject with family.

Did doc suggest anything for your hair loss? I was losing hair too. Did he run a thyroid check? If he did not, I would suggest that to rule out that possibility. I used BioSil drops and zinc to regain my hair growth. I know someone else that used Evening Primrose. They do work!

My body was very deficient on vits by the time I was diagnosed. You would be shocked by the amount of vits I was/still am taking. My mom, bless her heart, believes that people should get their nutrients from food and vits are a waste of money and that ws told to me by my father after they knew what I was supplementing. I know my mom means well but what she doesn't get is that my body was not absorbing, to the point I have bone loss.

My husband ws in his own denial after the diagnosis. We'd go out with friends to dinner and I would be asking the waiter all these questions about the menu and of course that prompted alot of conversation at the table. My husband would tell our friends that my system got real messed up from a liver cleanse that I did (which is what docs felt revealed this) and that we don't really know what is wrong. I would then follow it up with, "I was diagnosed with Celiac though." After 19 years of marriage I think he found it hard for him to accept. This wasn't just a change for me, it was a change for my whole family.

Hang in there! Do what is best for you!! Family will come around.

[rosetapper23]

Good advice! Yes, the BioSil and chelated zinc can do wonders for growing your hair back. It takes 4-6 weeks to see it happen, but you'll see new hair growing all over your scalp.

As for your husband, it can take a while for the adjustment to a new way of life. My husband wasn't as concerned in the beginning, but then he saw how ill I became if I was glutened (and he was the one who'd usually done the glutening). Nowadays, he's extremely careful and very supportive. Hopefully, your husband will come around.

[domesticactivist]

Oh, I just want to give you a hug!!! This is a really hard time of year to get a diagnosis, especially when your family doesn't understand.

The first thought I had when reading your post was "Why doesn't she get a hair piece while she heals?" If you had chemo and lost your hair, wouldn't your husband let you get a wig or buy some cute hats? You will feel so much better if you feel like you look good. I don't understand why you should need permission from your husband in order to get your hair fixed so that it looks normal. It sounds like he hasn't outright forbidden you to do it, so do it. I know you are reaching out for emotional support he doesn't know how to give right now and maybe that's the bigger issue. But still, take that step to make yourself look and feel better.

Same deal with the expense of your food. You can not take care of the rest of the family if you are not fed with foods that are safe for you. Personally, I do not go in for eating a lot of "gluten-free" foods out there. We found that processed foods were a bad idea, and not reliably safe. Instead we buy all whole foods (and organic, pasture fed meat) which is a lot more expensive than buying regular processed stuff. Your household budget will need to adjust, but you do NOT need to feel guilty for buying food that is healthy and safe for you.

Also, it may be unsafe for you to prepare foods for your children that are not safe for you. In fact, your children may have celiac disease as well and do need to be tested because there is a genetic component. The blood tests to get done in a full celiac panel are:

tTG IgA

EMA IgA

AGA IgA

AGA IgG

total IgA (if it is low that would throw off the other IgA related test results)

DGP (this one is now replacing AGA, it is more specific to celiac)

Your parents should be tested, too, but many people here have found it's very difficult to convince others. Maybe that's part of the reason she doesn't want to talk about it or thinks you are blowing it out of proportion. Maybe she is afraid of needing to make her own changes if she faces the fact that yours are necessary.

I think you are right to tell people your diagnosis if they are persistent about asking about your eating habits. That's not you being pushy or oversharing, that is THEM being RUDE! I'm sorry your husband doesn't seem to see this.

I think any time there is a change in one person in a relationship, it forces everyone around them to adjust. You were ready for a change because you were suffering. Everyone else probably liked things the way they were. It's more focused on sex, but the book "Open Original Shared Link" is really good for explaining the way relationship dynamics in marriage have to adjust to changes, and how to deal with that. It might be a worthwhile read for you.

I'm sorry to hear that you don't have in person support right now, but I'm glad you have found us here. You may also look into whether there are any support groups in your area. GIG has some. See if there are any in your area here: Open Original Shared Link

[sandsurfgirl]

Oh honey here's a big hug!!! It gets so much better! The first couple of weeks it feels like you're in the eye of a storm. The first time I went grocery shopping I ran out of the store in a panic attack, hurried home and sobbed on my couch for like an hour.

Over time you find products that are good, recipes that are good and restaurants that will accomodate you.

I think you hair will grow back, but in the meantime, maybe you can get a few extensions for your Christmas present to make you feel better. Hair Locs are really good if you have a salon nearby that does them. They go on with a little bead like making jewelry. Great Lengths is really good too but maybe too pricey for you. They infuse the extensions to your hair so it feels pretty natural. There are also the clip in ones that you take out at night. Plenty of options for you.

I am always posting this to newbies. Gluten Free Pantry Basic Sandwich bread is about $4 a box, especially if you order it in bulk online on that site we aren't allowed to name. It makes a big loaf, like Wonder Bread size. I bought a loaf pan on line that's long instead of the little banana bread type pan. Now I have a Breadman breadmaker with a gluten free setting but I made it by hand for a long time. It takes longer to rise than it says on the box.

Gluten Free Pantry also has excellent pizza crust and it's not as expensive either. It makes two cookie sheets of pizza for me.

At first you want to eat simple and clean anyways. Give your body a chance to heal. Then you can experiement with all the gluten free stuff.

Glutino is another brand I love. Their pretzels and cookies are all great.

Tinkyada pasta is really good.

Hang in there. It gets better!

[ravenwoodglass]

Welcome to the board. You have found a great place for info and support. It is hard at first but the trouble will be worth it in the end. Your hubby may become more supportive once he sees how much better you feel. That can take some time and do keep in mind that some of us will go through a withdrawl for a short time so if you get a bit more moody that will end.

Do be sure to get a new strainer, replace wooden untensils and get a new dedicated toaster for you toast or use foil in your toaster oven. If you go with whole unprocessed foods at first that can help with the healing.

I took Biotin to help with my hair loss. I also got some of the Joan Rivers hair powder. It wasn't expensive and really does help hide the bare scalp. It stays put until you wash it out too. It can seem to take forever for the hair to grow back but it should grow back.

I hope things are going better for you soon.

[Cathey]

Sorry you are having a hard time and DH really is no support right now. He will come around, he is a bit scared now. Maybe you can have a chat @ night when the children are in bed (I read this today, I want to try that, etc.) AVR was right "you have a great support here" there are very knowledgeable folks here, dealing w/ this for years.

I can tell you it sounds like you are depressed and consuming this life change along with your hair loss is too much @ one time. I was depressed for months before my being diagnosed 5 weeks ago, focusing and concentration were a daily battle.

Please take one day @ a time. It will get better, as you heal from the inside out. Try the advise of others here for solutions for the hair loss. Speak to your GP and get on a Vitamin and Daily Supplements program.

It's very important to rid your home from as much cross contamination as possible (toasters, cooking pans, cutting board) read the forums for advise. Please, be careful if you are cooking for the family and making something for you separate.

It will get better, we have to heal. Feel good about you before you know it hair will be back and you'll being feeling better and looking great.

Cathey

[sandsurfgirl]

There is a grief process you have got through and I liken it to losing a loved one. Let yourself go through the stages of grief and process all the feelings associated with this. This board was my lifeline when I was diagnosed.

[Strawberry-Jam]

I totally feel ya. Coeliac made me sick and miserable for my whole senior year of college; it was a battle of my mind and will versus my body. I did have a good year overall but I had to seriously tone down everything I did and limit my social life and forcefeed myself lest I starve. And even now, 9 months gluten free, I'm still having symptoms and problems which are taking a while to resolve themselves.

Just treat your gut nicely, eat as healthy as possible (that is, limit your "gluten free" products and focus on fresh veggies, fruits, meats, nuts, seeds, etc), supplement the vitamins you've been malabsorbing for all this time, and take it easy! Be as vigilant as you need to about food and CC and who cares what anyone else thinks. You can educate them as time goes on. When they see you getting better, they'll start to realise how important diet can be.

Also... I work in a beauty store called LUSH and we sell a shampoo bar called "new" which is good for thinning hair (you can find it Open Original Shared Link, and I can say from experience that it smells AMAZING, and that these solid shampoo bars last for ages and ages). It contains peppermint and cinnamon, among other things, which stimulate blood flow to the scalp. It doesn't grow hair back, but it helps you to retain the hair that you currently have. Maybe you could find a product like that which you could add to the supplements that do grow hair back and hair extensions/hats in the meantime. Make sure it's gluten-free of course!

[Roda]

I'm sorry you are having a hard time with this. If your husband won't discuss things with you then do what you need to do to get well. If it means that your food is more expensive then so be it. Don't feel guilty about it. Go get those hair extensions if it will make you feel better about yourself. I would recommend that you get your thyroid checked and a full vitamin and mineral panel done. So often as celiacs we are deficient due to the malabsorption. I definatly would have a full thyroid panel(TSH, free T3, free T4, thyroid antibodies) and complete iron tests and ferritin test. Thyroid issues and iron deficiency/anemia can cause severe hair loss.

[Katrala]

Celiac will only ruin your life if you allow it to do so.

My symptoms were almost identical to yours.

Yes, the whole thing really sucks. You'll go through a grief-like process and then you'll be better. And then the grief will sneak up on you from time to time and then you'll get over it.

At first buying gluten-free processed foods seems the way to go, but you'll quickly learn that it's so freaking expensive that eating naturally gluten-free foods is tons easier.

I work 50ish hours per week and have 2 children, one with special needs. Dealing with the food issues can be time-consuming, but I've found the easiest thing to do is setting up the menu ahead of time and looking for "easy" gluten-free meals to make.