Scared After Reading The Omg Thread

[Nan2N]

Hi All

I was just reading the OMG thread and it's got me pretty scared. I was just diagnosed and now I'm wondering what else could possibly be bothering me. I don't get the gut issues so it's hard to tell what may or may not cause me a problem. My nutritionist wants me to load up on rice and nuts and dried fruit to supplement my meals because I'm so thin and can't gain much weight and have no appetite. I haven't seen much of an improvement yet, although I know it hasn't been that long. I think cutting out more foods to see what happens will leave me even thinner. I'm having trouble wrapping my head around all this information and what I should be doing. I'm just so overwhelmed.....any advice??

Thanks

[CarlaB]

Sorry the thread scared you. Many of us on the thread have been where you are now ... scared.

Were you diagnosed with celiac disease? I want to point out that most of us on the OMG thread are/were gluten intolerant, but did not have celiac disease and did not improve completely on the gluten-free diet since we had other undiscovered health issues going on.

If you really have celiac disease, your ongoing symptoms might just take a while to go away. Celiac does not heal overnight. Give it time, and you will feel better. In the meantime, eat simple, unprocessed foods to heal your gut. Nuts and dried fruit are high in calories, but if they upset your stomach, they would be counter-productive.

Don't worry too much about your weight. It will come back as you heal.

If you still see no improvement after a few months on the diet, then start worrying about what else might be wrong .... but at this point, give the gluten-free diet time.

I would also suggest cutting out dairy for a few months as it's a problem for many celiacs in the beginning.

[Nan2N]

Thank you Carla!

I've been really worried about all the things that could happen to me know that I have celiac disease (I had positive blood work, negative biopsy). I'm not sure how long I've had it, but I think it was caught early.

I'm just overwhelmed with worry...can't seem to shake it.

Understanding what I can and cannot have, plus where it's hidden seems an impossible task at this point.

I feel a little frozen over it. Afraid to try anything. But want my health back at the same time. Wish I could just go buy some subs and donuts and get the weight on!

[CarlaB]

Yes, it does seem impossible in the beginning, but I can assure you, it becomes second nature after a while.

Start out with the obvious things -- meat, eggs, fish, poultry, fruits, veggies, rice, potatoes, etc. There are many things that are naturally gluten-free.

Then, when you're comfortable, start finding gluten-free recipes, flours, cookies, etc. But I would hold off on the processed foods until you feel better.

You will learn. You will gain weight. You can be scared because it's overwhelming in the beginning. But don't get scared over the OMG thread .... we are a bunch of people most of whom tested negative for celiac disease, felt better going gluten-free, and were looking together for what might really be wrong with us. Together we found our answers.

You, on the other hand, have your answer.

[KimmyJ]

Hey! It is very overwhelming at first - and I really can identify with your weight problems - I can't gain weight either. I don't know if dairy is a problem for you, but I eat a lot of gluten-free ice cream to try to help gain some weight - my nutritionist said that it was perfect because it's high in calories and nutrients. That won't help if you're lactose intolerant, but just thought I'd offer it up as a suggestion. Just curious - have you had your thyroid levels checked? There often seems to be a link between the thyroid and Celiac, and I just found out that I have hyperthyroid issues, which are most likely contributing to my weight loss. Of course I don't know you're whole situation, but that might an avenue to pursue if you haven't already. Good luck!

[missy'smom]

End of July will be my 2 year gluten-free anniversary. I just this past month started gaining weight, which was a sign to me that I've reached a new level of healing. I dropped 16 pounds seemingly overnight when I first went on the diet, leaving me slightly underweight for me. I'm not one to diet or worry about weight. I know what is a good weight for me. I say as long as you aren't continuing loose and aren't dramatically underweight and generally eat enough and a balanced diet, don't worry about it.

On another note, I have been casein free for 4 months. I have obvious problems with it and my BM's normalized and that may have helped me achive more healing.

Loading up on carbs, especially refined ones and white rice can cause a gain in weight for people in general but it is not a healthy weight gain and can lead to other health problems such as diabetes. Everything in moderation. Brown rice would be a better choice because it contains more nutients and doesn't cause as much of a spike in blood sugar and will give you more sustained energy.

Hang in there and keep being gluten-free. It's hard work but it will pay off. Give it time.

[Nan2N]

Hey! It is very overwhelming at first - and I really can identify with your weight problems - I can't gain weight either. I don't know if dairy is a problem for you, but I eat a lot of gluten-free ice cream to try to help gain some weight - my nutritionist said that it was perfect because it's high in calories and nutrients. That won't help if you're lactose intolerant, but just thought I'd offer it up as a suggestion. Just curious - have you had your thyroid levels checked? There often seems to be a link between the thyroid and Celiac, and I just found out that I have hyperthyroid issues, which are most likely contributing to my weight loss. Of course I don't know you're whole situation, but that might an avenue to pursue if you haven't already. Good luck!

Hi

I've had my thyroid checked as well as about everything else. I'm just so exhausted all the time and have no motivation. I've completely lost my appetite so eating is really hard. My doctors tell me I don't have malabsorption issues....so why the drastic weight loss I wonder. Before diagnosis I was eating..maybe not enough to gain weight but enough to stay the same and I was losing about 4 pounds a week. Very scary. I've been able to gain 1 1/2 pounds (whoo-hoo!) and feel like it's so much work. Never ever thought I'd say that!!! I don't know if I'm lactose intolerant. Kinda scared to try it. I've never had digestive trouble though so it might be worth a shot. Ice cream usually puts weight on me fast. What kind is gluten free? I'm terrible at trusting myself to read the labels.

[happygirl]

In case you haven't seen this, it should make it easier for you to read labels. If you don't see wheat, rye, barley, barley malt, or oats clearly listed, then gluten isn't contained in a hidden source. Takes a lot of the worry out of label reading. Print it out and bring it with you to the grocery store.

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[aikiducky]

I don't know if I'm lactose intolerant. Kinda scared to try it. I've never had digestive trouble though so it might be worth a shot.

I think it's pretty safe to say that if you don't have digestive troubles, lactose isn't a problem for you. The typical symptoms of lactose intolerance as far as I know are gas, bloating and diarrhoea. It's a pretty straight forward intolerance where some people's intestines don't produce lactase, the enzyme needed to digest lactose, and consequently the bacteria in the gut start breaking up the lactose instead, producing extra gas and stuff. So if you don't have that kind of symptoms it's pretty unlikely that you'd have a problem with lactose.

I'm with Carla on this one, I don't think you should worry too much at this point. Better put your energy into learning how to read labels and cook delicious gluten free meals, and you'll see in a few months how you are doing.

Pauliina

[KimmyJ]

My personal favorite brands of ice cream are Ben and Jerrys and Haagen Daas (did I spell that right?). Both of those brands are gluten-free, unless it's a flavour that obviously contains gluten (like cookie dough, brownie, etc, just check the label). I'm a big fan of Ben and Jerry's Pistachio ice cream. SO GOOD! I really feel your pain about the weight loss thing. Who thought a person would complain about not being able to gain weight? But it is rough.

[larry mac]

I was just reading the OMG thread and it's got me pretty scared..... I'm just so overwhelmed.....

At 28,595 posts, I'd be overwhelmed also.

good luck, lm

[ravenwoodglass]

Hi

I've had my thyroid checked as well as about everything else. I'm just so exhausted all the time and have no motivation. I've completely lost my appetite so eating is really hard. My doctors tell me I don't have malabsorption issues....so why the drastic weight loss I wonder. Before diagnosis I was eating..maybe not enough to gain weight but enough to stay the same and I was losing about 4 pounds a week. Very scary. I've been able to gain 1 1/2 pounds (whoo-hoo!) and feel like it's so much work. Never ever thought I'd say that!!! I don't know if I'm lactose intolerant. Kinda scared to try it. I've never had digestive trouble though so it might be worth a shot. Ice cream usually puts weight on me fast. What kind is gluten free? I'm terrible at trusting myself to read the labels.

Have you added a sublingual gluten-free B12 to your supplement regime yet? That may give you some real relief from the exhaustion and may even help your appetite. Another thing that has helped me with appetite is Royal Jelly. I can't believe how much it stimulates my appetite. You might want to try it as long as you are not sensitive to bees.

I do agree with the others who reccomend that you give the gluten-free diet a bit more time. It can take a while to heal. Also some of us see a weight loss at first not because we are actually losing real weight but because the celiac has caused us to take on a lot of extra water weight. In some cases the edema is full body and if we are small to begin with it isn't real obvious to doctors or us. I lost a shoe size when I was diagnosed and asked my doctor what was going on, full body edema was the answer.

It can take a while to heal enough to gain weight back. And it is hard for many of us. If you can find something high calorie to munch on throughout the day that may help. For me the best thing was a huge bag of pretzels, gluten-free of course. They allowed me to add an extra 1000 calories a day and within a month I had gained back 5 lbs. Hopefully you will find something soon that will work to help you gain.