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New To Celiac - Feeling A Bit Confused And Frustrated

tkm831

By tkm831
in Coping with Celiac Disease

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tkm831 Rookie
tkm831
Posted

My endscopy confirmed that I have celiac about a week ago. I am trying to keep a good attitude about this but I have my moments. I am also type 2 diabetic and have been for 9 years so I figure I got a handle on that I can do this too. This is really so much more difficult.

You see I did not have the "typical" symptoms, vomitting, Diarhea, stomach pains so it kind of came as a surprise. In fact the only way I knew was that they added it to the bloodwork for my pre IVF testing. Of course after reading the other symptoms I was like hey I have that and that and that. The exhaustion, the irritability, feeling down, feeling like I am in a fog, and even teeth discoloration. I was attributing a lot of that to having a baby a little over a year ago. I figured between chasing a 15 month old and hormones it was normal to feel like this.

I mean I am relieved to know that I will start to feel better and I am very anxious for that. The problem is I am not sure that I am doing this right. I guess when I start to feel better I will know when I have been "glutened" (I have seen this expression on the other posts). At least with diabetes if you know you ate a little too much sugar you can workout or adjust your diet and get your blood sugar under control. This seems so much more complicated and overwhelming. Especially since I am still feeling the symptoms.

It doesn't help that money has been a bit tight so I haven't been able to actually go do a proper food shopping since I got the official diagnosis. I have kind of been winging it looking things up as I go along. I work much better when I have things at my fingertips.

Has anyone not had the bathroom issues and just the other symptoms??? How long until you felt better and how did you know if you had ingested gluten if your body did not react in the typical way?

I guess I am just venting and I thought you would all understand.

Thanks for listening.

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elye Community Regular
elye
Posted

Hi, tkm! Welcome....you've come to the right place!

I was asymptomatic when I was diagnosed - - no digestive or neurological symptoms. I had low iron, which at the time was attributed to my being a menstruating woman. :huh:

When I first started the diet, it was difficult to know if I was staying completely gluten-free, as I was not feeling any symptoms were it to happen. However, after being on the diet for a few months, my intestine healed and I then started to get the obvious, classic symptoms when I was cross-contaminated: cramping, bloating, diahrrea. So if you give it some time, you will likely get the physical signs that you've eaten gluten.

This site is a fantastic resource for foods and products to avoid. Also, the diabetic diet fits perfectly with the gluten-free diet, something that took me a while to realize (I am type one). Gluten-containing foods cause higher blood sugars, so avoiding them is a great thing for that reason alone!

Good luck, and keep us posted on how you're doing. :)

sombrita220 Newbie
sombrita220
Posted

I didn't really have the usual symptoms either. No diarrhea, vomiting, etc. I did have stomach pains but I got my gall bladder out and stopped eating gluten the same week so I don't know which it was. I think infertility was really my only symptom.

Now that I've been off gluten for a year, I think I got "glutened" once or twice and I actually did get stomach pains and a lot of burping for a few days. I think another symptom I used to get was a lot of stomach acid/acid reflux. I noticed it after eating Grape Nuts or Shredded Wheat before I found out I had Celiac Disease. It wouldn't happen after a hamburger or a sandwich though. I don't know why. Within two months of quitting gluten, I got pregnant and now have a 4-month-old baby boy after trying for 8 years.

The diet is a bit hard at first. I missed certain things . . . chinese food, cookies, etc. It seemed like the only things I could eat were fruit, veggies and candy. It's not like that anymore. I've kind of figured it out. Sometimes I'll make my own gluten-free chinese food or cookies.

The specialty gluten-free foods are expensive. I just get a few things like gluten-free soy sauce and cereal. You just have to cook meals that are naturally gluten free. You'll get used to it. I did. And it's not so bad.

MELINE Enthusiast
MELINE
Posted

Hello and welcome...

I was asymptomatic for 11 years and just for the last year started feeling some of the symptoms.The only thing I had was fatigue, severe abdominal pain, hair loss, bad body odor (malabsorption) and acne because of lactose intolerance. Now if I have a tiny amount of gluten I have nausea, tingling in toes and fingers, eczema, brain fog, loss of balance, dry eyes and ringing ears and awful headache and fatigue. It is strange.....when you get that thing off your system and then you put it back you have so intense symptoms.....So don't worry you will know if you are glutened or not.

It took me 3 weeks to feel better in energy and I must tell you sometimes you may feel worse before you start feeling better. It is a very low process and you have to be patient. But trust me it will happen. Now after almost a year I am feeling more energy than ever before but my hands and me feet hurt a lot and I have gluten ataxia. But no big deal!!! better than acne....

Maybe you will have to eliminate lactose / casein and / or soy until your villy heals. You may also need to take some supplements (be careful to read the ingredients - lots of them have gluten). Do not trust anything, ALWAYS read the labels in EVERYTHING you eat/drink. Don't touch your hair and then put your hands in your mouth cause your styling products may have gluten. Check out cosmetics. toothpaste, mouthwash, everything.

The label wheat free does not mean gluten free .

Read read read as much as you can.

but most of all..

Be patient....You will feel better. Some people feel better in weeks others in some months and few in 1 year or more (I said few...). Drink a lot of water and keep a balanced diet.

Believe me...it gets SO much easier as time goes by.

Meline

samcarter Contributor
samcarter
Posted

Well, i haven't had the weight loss, constant diarrhea, that are the "typical" celiac symptoms. I tended to alternate between constipation and diarrhea.

I only recently started to suspect gluten intolerance when I was having the horrible fatigue/drugged feeling after eating a meal of pizza on Saturday nights...and then I'd just want to space out.

Then I started reading up on gluten and realized that I've had some of the symptoms (stomach pains, vomiting, compulsive eating, depression, headaches, psoriasis) that others have described.

Don't expect to feel better immediately. Depending on the level of damage you have, it can take years to heal. I started to feel immediately better after cutting out gluten..and then the sugar cravings started, and eating a lot of sugar is not good for one either. So i'm paddling my way out of a sugar coma and working on eating healthier. Just like with vegetarianism, one can be gluten free and still eat an unhealthy diet!

I don't do the grocery shopping--my husband does on the way home from work. I have to give him very simple lists, so he doesn't have time to hunt for a specific specialty item. One evening a week I go to the store for any special items I might want (jasmine rice, Larabars for traveling).

Like others will tell you, it simplifies things to eat naturally gluten-free foods. Rice, potatoes, corn tortillas, fruits, vegetables, meats, eggs. depending on what you can tolerate. I personally have found Silk Live! yogurt to be a lifesaver, it tastes good (I tolerate soy well, so far) and I can grab one for a quick breakfast. Most dairy yogurts are gluten free, as well.

I will say I don't miss bread. I miss the "idea" of bread, if that makes sense. I don't miss pizza per se, I miss the pepperoni or the cheese. But not the bread part. I don't miss pasta. I do miss crackers...I caved and ate some Goldfish crackers last night, and boy, do I regret that today. It will probaby take me a few more days to recover.

MELINE Enthusiast
MELINE
Posted
...I caved and ate some Goldfish crackers last night, and boy, do I regret that today. It will probaby take me a few more days to recover.

:o I hope you will recover soon....

Rya Newbie
Rya
Posted

Hey tkm, I'd also love to welcome you. It is very overwhelming to be diagnosed with a new condition, especially one that involves so much responsibility from you versus a healthcare worker. The good news is many people have worked through this, I am confident you can also.

Congratulations on a baby! I know you said your little one is 15 months already, but always a joy.

What did you mean by proper grocery shopping in your post? If you are in need of meal or snack ideas, I just scrolled through that delicious string of posts on snacks and I as well as others would be happy to help you think of foods to get a balanced diet.

I will caution you on supplements as someone with multiple medical conditions. However, a multivitamin with iron and folic acid will be of great benefit, especially if you are still trying to conceive. Iron stores are low in Celiacs, and it typically takes one to two years for a mother to recover her iron stores from a pregnancy. Folic acid is difficult for anyone to consume enough of, especially Celiacs given that we do not eat fortified grains and cereals. This is also very very very important if you are trying to conceive.

A fantastic cookbook I recommend is Wheat-Free Gluten-Free by Carol Fenster. I recommend thumbing through it at a bookstore to see if it is something you might like. When I was first diagnosed, I was upset and told my mom that I would just eat potatoes and vegetables and life would be fine. Lucky for me, she insisted I buy that book, and we have used the heck out of it.

Ah yes, and as far as knowing when you've been "glutened." Many times, people will find that as they follow the diet, each exposure will produce more severe symptoms. Conversely, if one does not follow the diet, they will have the same response, usually in a constant state.

Good luck to you, you can handle this. Also, how are your blood sugars? If they are getting out of whack, most especially if they are normal at night and high in the morning, feel free to PM me.

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GFqueen17 Contributor
GFqueen17
Posted

like everyone else said, you will definately know when you eat gluten by accident. once you haven't been eating it and it enters your system again, it is unbearable.

tkm831 Rookie
tkm831
Posted
  • Author

Hey tkm, I'd also love to welcome you. It is very overwhelming to be diagnosed with a new condition, especially one that involves so much responsibility from you versus a healthcare worker. The good news is many people have worked through this, I am confident you can also.

Congratulations on a baby! I know you said your little one is 15 months already, but always a joy.

What did you mean by proper grocery shopping in your post? If you are in need of meal or snack ideas, I just scrolled through that delicious string of posts on snacks and I as well as others would be happy to help you think of foods to get a balanced diet.

Thank you all for you support and I am so happy to have found this site. I am sure it will be a great resource for me.

Rya - Thank you for all your well wishes. I am loving being a mom it took us a long time to get there and she is truly amazing. What I meant by proper food shopping was like a weekly shopping where I get all the stuff for our meals for the week, snacks etc. I have had just the basics around the house and have been getting the items I need on a daily basis. This is more stressful to me, I like to be prepared.

Rya Newbie
Rya
Posted

Understandably so!

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