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Wished I Have Known

MChase

By MChase
in Coping with Celiac Disease

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MChase Apprentice
MChase
Posted

I've been gluten free for about 9 weeks now.  Although  I have my ups and downs (emotional) about being gluten free, it has greatly helped my health.  I also have found out (by keeping a food journal) that I cannot have dairy and eggs, raw onions, any red onions, garlic powder (small amounts of fresh garlic is okay), ground ginger, bananas, mushrooms.  Over Christmas, my mom and I were talking about food issues.  She informs me that when I was little, lots of foods bothered me.  She said that if I ate eggs more than once a week, I would be extremely sick.  She also said when I was really little and then again when I was pre-teen, that I was diagnosed with lactose intolerance.  I do remember that as I got older I didn't eat eggs much (don't like the taste) , the same with milk.  I also remember when I was little, one dr told her to put chocolate in my milk to get me to drink milk since I refused it.  I also remember being little (5-8), every time I visited my grandmother, I was so sick, that I couldn't get out of bed (she forced us to eat foods even if we didn't like them).  I also remember as a teen, I hardly ate lunch at school because I didn't want any embarrassing symptoms to pop up.  

 

As an adult, I have been in the hospital many times for pelvic pain, stomach aches, etc.  Usually I get told I have food poisoning (even if other people ate the food that I did), once I was told I was allergic to shrimp (went years without eating shrimp) and some other things.  Over the past 20 years, I have had several ultrasounds (incl transvaginal), ct scans, dye tests, laproscopies (4), and surgeries.  Plus countless of medical problems.  

 

I guess I really don't have a question, just venting a little.  If I have always had problems when I was a kid, why did my mom not think it was important to inform me of these food problems when I became an adult?  I will be 40 next week.  What would my life have been if I was able to find out these issues earlier in my life?  The good thing is that I am finally figuring it out.  

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IrishHeart Veteran
IrishHeart
Posted

  What would my life have been if I was able to find out these issues earlier in my life?  The good thing is that I am finally figuring it out.  

 

Hon, I think we have all asked this same question.

 

I might have had children, for starters, since frequent miscarriages are common in undiagnosed celiac.

 

My Mom feels so bad because I told her about leg pains and all kinds of stomach issues when I was a kid. I finally told her, stop doing that---how were you supposed to know, Ma? It's not her fault and the family doctor certainly had no answers. 

Both of us are G F (she did it after my DX and she feels fantastic at nearly 87! She can walk circles around people half her age.)

 

I had all those same invasive procedures you describe and then some, but I no longer waste time saying "what if"...about this or anything else that happened in my life, because  we can't go back. No time machines. (yet :)  )

 

Just be glad you know now and can have a healthy & happy rest of your life. Some people never get the opportunity to have a second chance

like this! If I knew what I know know about celiac and it's many symptoms, I might have stopped the horrid decline I had for years...or maybe saved my Dad. Can't change a damn thing about the past, but we can surely suck the life out of every single day now!!

 

That's what I do. Once you get past the "damn it!" part of this revelation, you will move forward too, hon.

 

It's okay to vent and get mad (maybe throw a toaster around the back yard? :D ) but then, let it go.... For your emotional good health.

 

Happy, healthy New Year to you! 

Adalaide Mentor
Adalaide
Posted

maybe throw a toaster around the back yard?

 

I only did that once! Okay. Sheesh... :huh:

 

Irish is right, we've all asked that question. The simple fact is that we find out when we find out, and how we deal with it then is what matters.

 

I could choose to live with anger and resentment because I went through living hell for decades with doctors who couldn't figure out what was wrong with me. But that would just make me an angry and resentful person and give me wrinkles. What I have now is a gift. The gift of knowing and of the ability to control my life now and to get well. Plus, as a parent I can say that mom's do the best they can with what they have. It's all they can do. And a lot of doctors will tell parents that their kids will grow out of allergies and food problems so you can blame your mom and get wrinkles, or you can simply accept that she did the best she could because she's a mom and that's what moms do and move on.

 

And lets face it, if most of us look back at our 20 year old selves and think honestly "if we only knew" we would have to own up to the fact that what we would have done then and what we did when we were older are not the same thing. When we're young we're invincible, we're going to live forever, nothing can hurt us. We weren't nearly as mortal as we had to face being by the time we actually found out. 

 

You are figuring it out now, and that really is what matters. Vent and get out all the anger, and then you can move on happily adjusting to what has to be your new normal. Before you know it you'll adjust.

w8in4dave Community Regular
w8in4dave
Posted

I wonder some of the same things!! When did this start, why? when I have complained to the Drs. did they just fluff me off? It got worse and worse!! I wonder why alot of things have happened since I have been Dx'd .. But I guess it is what it is and we deal with it! Be thankful we are at this point now, so we can have more control. We know now! So we have been empowered to do something about it! 

eers03 Explorer
eers03
Posted

My mom was able to figure out that I am IGA absent.  She knew I could get or keep an infection longer than the average kid.  Beyond that, I really didn't have a lot of symptoms other than just constantly staying thin.  

 

My mom has spent a lot of time beating herself up for not figuring things out sooner but honestly, if for years up until the last two I didn't think anything was wrong, why would she?

 

I think what you are feeling is very natural.  Medicine is just not a one size fits all perfect science, its a practice.  I guess this is why.

notme Experienced
notme
Posted

my mother would have been overjoyed to finally know what has been wrong with me all these years.  she may have even suggested cutting out gluten to me over the years, but i wasn't sick enough, i guess.  when i got dx'd, the first person i wanted to tell was my mom.  she is in heaven, so i'm sure she knows.  i always had issues when i was a kid, but my trigger was pregnancy, long after i was out of her house and her responsibility.

 

on the other side of the coin, my son was dx'd with type 1 diabetes at age 19!!!  hey, Mom of the Year, way to completely miss a life threatening disease  :(  and he was 950 miles away when he finally got sick enough to go to the dr - when he went away to school.  we had no clue, not even a little.  he played soccer for school, so he had regular physicals, etc, soooooooooooooo.................

 

it is what it is.  get over it and get on with it.  your mother loves you.  the end.

AVR1962 Collaborator
AVR1962
Posted

Give it all time for your body to heal. The first year is the big year for healing. You may be able to add back some things after that first year but when the system gets so broke down we have to have that healing time. I too was not able to eat dairy, oats or any gums the first year. I now can have dairy and oats but do avoid cow's milk even still after 2 1/2 years.

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cyclinglady Grand Master
cyclinglady
Posted

Give it all time for your body to heal. The first year is the big year for healing. You may be able to add back some things after that first year but when the system gets so broke down we have to have that healing time. I too was not able to eat dairy, oats or any gums the first year. I now can have dairy and oats but do avoid cow's milk even still after 2 1/2 years.

Xanthan gum has been bothering me, so I have switched to guar gum. It makes it difficult to travel and purchase commercial gluten-free products though.

Glad to here that your gum and oat issues have resolved. It gives me hope!

eers03 Explorer
eers03
Posted

my mother would have been overjoyed to finally know what has been wrong with me all these years.  she may have even suggested cutting out gluten to me over the years, but i wasn't sick enough, i guess.  when i got dx'd, the first person i wanted to tell was my mom.  she is in heaven, so i'm sure she knows.  i always had issues when i was a kid, but my trigger was pregnancy, long after i was out of her house and her responsibility.

 

on the other side of the coin, my son was dx'd with type 1 diabetes at age 19!!!  hey, Mom of the Year, way to completely miss a life threatening disease  :(  and he was 950 miles away when he finally got sick enough to go to the dr - when he went away to school.  we had no clue, not even a little.  he played soccer for school, so he had regular physicals, etc, soooooooooooooo.................

 

it is what it is.  get over it and get on with it.  your mother loves you.  the end.

How did you finally figure out that he was Type 1?  How did it finally reveal itself?

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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