Going Backwards - My Story

[Derek Borckmann]

Hello everyone. I actually do have a question at the end and apologize for the long post.

I have been reading this board since I was diagnosed a few months ago and am posting for the first time. Here is my story.

My name is Derek and I have been very lucky in life. I am 40 years old, have a wonderful caring wife, three beautiful sons ages 5, 3, and 1 year old, I am lucky enough to be able to play competitive volleyball and softball, have an executive position at a software company that I have spent that last 12 dedicated years growing in, and we are fortunate enough to live in a nice area of South East Wisconsin that is both beautiful and safe. I like to think I earned everything through hard work, commitment, and dedication.

I should be happy right. Wrong. Right now I am as miserable as I have ever been and feel extremely guilty about it.

For the last few years I have not felt right and have experienced periodic issues with severely bad stomach issues, fatigue, and dizziness. This all started after a bout with mono that had taken me a while to recover from. Mono was a bummer as I went five years without getting sick at all before this and have not been the same since.

I had started to talk to the doctor about these issues and was tested for all kinds of items including Diabetes and many other issues that all came up negative. I had heart tests, head CT

[Ursa Major]

Hi Derek, and welcome to this board.

Have you eliminated dairy from your diet? That is an absolute must for at least the first six months of your gluten-free diet. The tips of the villi (which are non-existent right now) are supposed to produce the enzyme lactase to digest dairy. Most people who start the gluten-free diet won't get better until they also eliminate dairy.

Have you gone through your personal care products (shampoo, conditioner, toothpaste, chapstick, soap, lotions etc.) to make sure none of them contain gluten, and replaced the ones that do with gluten-free ones? Also, vitamins and prescription meds can contain gluten as well.

Have you bought a new toaster, new cutting board, new colander (for your gluten-free pasta) and new cooking spoons?

You need to get tested for nutritional deficiencies, so you can supplement accordingly. The tingling could be caused by a vitamin B6 deficiency. You might be anemic as well.

See your doctor and have him test you for levels of vitamin D, calcium and magnesium, potassium, vitamins B6 and B12, ferritin (iron), hemoglobin, vitamin K. All those are common problems with celiac disease. Please, others chime in if I forgot something, I am tired and can't think any more.

Don't be ashamed of being ill, it isn't your fault! You need to take care of yourself and get better, don't worry what others think. I am sure your wife wants to do everything she can to help you get well.

I was unable to tolerate anything raw for about six months after eliminating gluten and needed to cook all vegetables and fruits, or I would get a terrible stomach ache and diarrhea. Try cooking everything and eat several smaller, easily digested meals a day. It might help.

To your questions, yes, it can take a while before you feel better. You should start seeing some improvement soon, though. Most people will fully recover, and within five years of being strictly gluten-free your chances of getting cancer will be the same as everybody else's, and you'll be healthy. And yes, depression is extremely common with celiac disease.

I hope you start feeling better soon.

[jknnej]

You poor thing! Some (hopefully) answers to your questions!

Yes! It can take several years for your intestines to heal, and yes, gluten is hidden in everything. That's the bad news. The good news is that it goes get better-take it from thousands of us here, and you will learn very, very quickly what you can and cannot have.

Yes! Depression is common. I had NEVER been depressed in my life before my diagnosis. To spare you a long, long story, I now take a low dose of anti-depressant (Cymbalta) and it has me back on track. I was one of those "I will never take anti-depressants" people until several doctors told me they could not help me any further unless I at least agreed to TRY them. But, you must consult a doctor about this to make sure your symptoms correctly fit the bill and are long term. You may just be depressed temporarily. Talk with your dr about this. It changed my life. And I only take a child's dose ( I am 30 years old).

I see long term prognosis as GREAT as long as you stay gluten free completely and do NOT EVER CHEAT. Of course, we all get accidentally glutened from time to time, but bingeing on pizza is a no-no, no matter how badly you want it.

There are tons of great foods and restaurants where you can eat.

Do NOT worry about inconveniencing other people. Your family loves you. It took mine a long time to accept it...my mother moaned and groaned for a year before finally learning what I can have and now she emails me gluten free recipes and cooks for me on the holidays!

Be careful with cooking utensils; I had to get a few pots/pans and a pasta strainer that are separate from my husband's (he is not a Celiac).

What's good is, we can have pasta, bagels, pizza, you name it! If you would like to email me privately I can tell you tons of things and places that are gluten-free. I Live in Arizona and I have all sorts of shopping at my disposal...I'm not sure what it's like in your town. We have a Trader Joe's on every corner here, and a few select gluten-free restaurants that are fabulous...but I don't know about your town.

Please try and stay positive. I promise you in a year you will be writing posts to other fellow posters who are struggling. Please email me and I can help you. I am online all of the time as I am a teacher and enrolled myself in two online courses that require me to be on the internet forever-or at least it feels like it!

My name is Jennifer. Email address is jknnej@yahoo.com

Anyone else who needs help, feel free to email me as well. I eat out all of the time and have a great diet filled with yummy gluten-free foods. I can help!

[AndreaB]

You've been given great advice already.

If after you've checked everything, got new things to replace old/scratched kitchen items, gone over personal care items etc you still don't feel better (say after another 6 months) then I would highly recommend seeing a holistic/naturopath or preferably a good LLMD to have testing done for metals, candida, lyme, parasites etc. I'm not saying you have to be 100% because it does take longer to heal if you've had a lot of damage, but you should feel better.

Also aside from possible problems with dairy initially, others have found soy to be a problem as well. The more natural your diet, the easier this will be to start out with. Meats, veggies, fruits, some grains, nuts, seeds.

Definately have a vitamin/mineral panel run though. The tingling could be from a couple different things but the vitamin/minerals are the easiest to test for and correct, so start there.

[spunky]

Hang in there.

For me, the first 6 months gluten free were rough...I was depressed and sick...there were changes in my symptoms, but not much I could really call "better," or what I was hoping for.

During the 7th month, things began to change. It was like the sun started shining again...I felt happy and hopeful, and my health started responding well...I started having GOOD days, where I felt good again.

From month 7 through month 12, there were some ups and downs, but I gradually started getting more confident that life was getting better overall.

From month 12 to now, month 16, life just gets better and better every day!

I have been extremely careful about being around ANY gluten at all from any source.

Be careful: don't let gluten touch you in any way, and be patient...sometimes it takes a few months.

[alamaz]

It is very normal to be mildly depressed right now. You have lived 40 years of your life without wondering about what you were eating and now your life is revolving around food! It is a huge lifestyle change and can be overwhelming.

No one else has mentioned it but all of your children need to have the blood tests to rule out celiac. If your pediatrician won't do it there is a great program at the University of Chicago that may be of help to you (you said you are in SE Wisconsin, not sure if you're closer to Milwaukee or Chicago).

Are there support groups close to you? That may help you find local resources for gluten free food etc. When I search for gluten free stores in Chicago one in Milwaukee comes up that looks decent and they ship - Open Original Shared Link

I am the QUEEN of feeling bad about being a "bother" but I've had to learn how to accept that my closest friends and my family are there to help me and they have all been genuinely interested in helping me eat right. I don't know if it was on here or elsewhere that I read this but it's just like people who choose to be vegan. They can go out and not be a "bother" but have all sorts of demads. You HAVE to be gluten free and have a right to make demads. Also, since you have kids you can turn it into something fun. My dad used to make me pancakes every sunday morning and even though I'm 29 and don't live with my parents anymore I want to come up with a pancake recipe he can use for when I visit. Think of cooking & eating new things as something funyou can do with your kids (and wife!).

Lastly, can you take time off of work? You sound like a busy guy and sometimes you have to realize that you can't do it all and be healthy. Maybe a short reprive would help you sort this stuff out.

[JamiD]

Hi Derek, I'm a newbie here, but will share my experience in hope that it gives you hope.

I'm 42, mother of 3, an RN, and horses are my recreation. In the last several years, while being misdiagnosed, I felt like the biggest failure in all aspects and can totally related to the stigma of being high maintenance.

I made the Celiac connection myself last year and despite being off gluten for a few months and taking antidepressants, my depression was worse than ever.

When Celiac was confirmed in Feb of this year, I went through a period of both depression and anger coupled w/ anxiety of how I was going to manage.

Although many of my "other" symptoms, such as joint pain and fatigue improved, I started becoming GI sensitive to foods other than gluten which really worried me.

After reading this board, I reduced my diet to strictly home prepared meats, fruits, and green vegetables (both usually cooked), and my depression lifted dramatically. I'm guessing it's due to the immune response being quieted. I'm actually feeling pretty good now, not perfect, but I enjoy life again and am feeling positive.

So, in addition to the other advice, I would suggest that you simplify your diet for awhile (I found the Specific Carbohydrate Diet to be a good guideline for me), think grilled meat and veggies and throw in a fruit salad (poached or canned at first). This would mean sticking pretty close to home and treating trips away from home as a picnic, but it's doable and given the young ages of your kids, could be a positive thing.

Hang in there.

ps I've found that pan fried thin cut pork chops in olive oil with fruit make a good breakfast

[DingoGirl]

Great information from everyone, Derek. Welcome to this surreal world....let me just promise you, it DOES get better!

I was diagnosed at age 44, 16 months ago, and was so sick and weak that toward the end, it was an epic struggle to simply arise from bed, and it was truly HERCULEAN to walk my dogs. Severely anemic, white as a ghost, emaciated and hair falling out in clumps, I was sleeping about 16 hours a day, and there isn't even a word to describe how depressed I was.

Within SIX DAYS of removing gluten - and I was EXTREMELY strict - I rather popped back to life, as a wilted flower. the fog that had been encroaching for the decade prior just abruptly lifted......but that lasted only a month or so, and then I crashed. It went up and down like that for the first six months, I'd say.

Now, almost a 1.5 years gluten-free, I feel pretty consistently fantastic and my numbers have been restored to normal, or almost nearly so. The depression is MOSTLY gone - - and the depression that I do come across has more to do with life issues, I'd say, than chemical imbalance. My years of celiac and bipolar disorder eroded decades from my life, work, relationships, everything.

Ursula is right, you really should give up dairy for several months. I gave it up for about four months, and can now tolerate it, I don't eat huge amounts but I do eat it.

Hang in there, keep reading this board, this is where I and many others learned everything about how to live and eat.

[kbtoyssni]

Welcome! Sorry things have been so rough for you, but if you stay gluten-free you will get much better. I get the impression that you may be getting glutened somewhere and that's hurting your ability to heal. Does the rest of your family eat gluten or use shampoo/makeup that contains gluten? You might want to consider making your home mostly gluten-free to reduce the chances of contamination. Many of the things you eat on a normal basis are gluten-free if you just buy the right brands.

[NoGluGirl]

Dear Derek,

You will be normal again eventually. It can take only days for some people to heal. Other people take months or years. It depends on the damage to your intestines. Trust me, it will happen.

Dear Derek and JamiD,

I have a present for you guys! I have a list that should really help. This is overwhelming. I went through this with myself eight months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[JamiD]

NoGluGirl, wow! That is some list. Thanks for the time to type all that out.

A question about Worchestershire Sauce? I thought the soy sauce was off limits? It's one of my favorite marinades and I was sad to give it up.

[wowzer]

La Choy soy sauce is gluten free.

[gfmolly]

Hi Derek,

I am from SE WI and have found a few good gluten-free resources...Gluten Free Trading Company in Bay View, Good Harvest in Pewaukee, Outpost Foods has several Milw. area locations, Molly's Gluten Free Bakery in Pewaukee.

There is also a Milwaukee area support group called the Celiac Sprue Crew. I've not been to a meeting yet as I am new to this as well, but I did receive a new member packet and it was full of really helpful info. The thing that has helped me get through all of this is arming myself with as much knowledge as possible, and this is a great place to gain insight.

Best wishes to you.

Terri

[NoGluGirl]

NoGluGirl, wow! That is some list. Thanks for the time to type all that out.

A question about Worchestershire Sauce? I thought the soy sauce was off limits? It's one of my favorite marinades and I was sad to give it up.

Dear JamiD,

You are so welcome! I want to save people the exhaustion in the early months. I spent my days on the phone half the time. The rest of the day was cooking and then obsessively cleaning. I wanted to save others from that!

The Lea & Perrins Worchestershire is safe as long as you are in the U.S. In Canada, it is not safe. Soy sauce is allowed. As Wowzer said, LaChoy is safe. So is their sweet and sour sauce! Wal-Mart has their own brand of Great Value Soy Sauce, and it is labeled gluten-free. Wal-Mart also has Holland House Cooking Sherry that is gluten-free. Honestly, if I could not eat Chinese, I would never make it! That stuff is practically my life blood!

Sincerely,

NoGluGirl