New Celiac

[Alaska]

Can anyone tell me if after being diagnosed as a Celiac and you start going gluten free (apx. 3weeks) do you still have days when you feel worse than others for no apparent reason? I have been very strict with my diet because like most all I want is to feel better Is it normal to feel worse in the morning and better in the evenings. How about weight loss and weakness this seems normal from what I've read but after eating well, I'm still dropping pounds and very weak legged. Sometimes I feel like I'm going to pass out is this common? Are there any meds that can help?

I know three weeks is just a short time to expect big changes but I'm up here in Alaska and the Doctor that diagnosed me(biopsy) is hundreds of miles away and not spoke with me other than to say, "you've got it, I can set you up with an appointment with a Nutrisionist if you want." And haven't been able to even speak with him again. My apologies for rambling but I'm sure this will just be the first of many questions. How about personel care products, soaps, shampoos ect. can this effect me?

Are there any additional tests blood work or other you think I should have done? Thanks again.

[Eriella]

Hello,

Welcome to the board! To answer your questions, yes you will feel much worse some days than others just because of how the human body works and the detox process.

To make recovery easier, google every ingredient you use on this website to make sure that it is in fact gluten free, and not just hiding the gluten (ie Lays Potato Chips). Then, make sure you are getting the right nutritional mix. If you are eating healthy and getting the vitamins/proteins/minerals that you need, you will feel a lot better. Just because it is gluten free doesn't mean that it is healthy. A nutritionist can help, but you can also do it yourself. Eat several bananas to get potassium (for lots of energy), eat lots of spinach for iron, and lots of rice and beans for carbs, protein, and fiber.

Because you are in the first steps of recovery, keep very basic about your food choices. You can experiment with new recipes down the road, but I found that eating very basic food made me recover a lot faster because the less you do to food, the healthier it is. Also, eat lots of small meals all during the day to try to put on/maintain weight. I eat a banana, frozen blueberry waffles/EnviroKidz cereal, and coffee when I first wake up, yogurt with fruit or eggs around 10 am, rice and beans for lunch, carrots and peanut butter around 4, and rice/potatoes, chicken/beef, and veggies for dinner. It sounds like a lot of food, but most of it is low calorie, so your body actually needs you to eat more of it.

Have you considered another allergy/intolerance as well? You might be having dairy problems. Most people find going off dairy for a few months helps them recover. At the very least, don't drink straight milk for at least 2 months. You'll feel better.

As far as products, your best bet would be to search for your products name on this forum. A lot of people have already done the research on it, which will save you lots of time.

If you aren't feeling better within 2 months, go back for more testing, and if you need anything else, just ask!

[Guest Doll]

Hi there Alaska! I'm sorry to hear your doctor was not supportive after your Dx. Mine was about as "helpful" as well. Shame on him!

Yes, it will take some time to feel 100% better on the gluten-free diet, although most feel at least somewhat better right away. The older you are, the longer it will take to heal.

You should not be losing weight anymore, however! Make sure you are truly 100% gluten-free (this website has great info!), and that you are taking in enough calories. Make sure you eat nutritious meals spaced out throughout the day. Each should have carbs, protein, and good fats. See a dietician if you can.

Your doctor should have also checked you for vitamin deficiencies. You should start using a multi-vitamin.

If your symptoms are getting worse, or you are getting new ones, or you do not get ANY better after 1 month gluten-free, see your doctor ASAP. Your doctor needs to know, in the case that you are not responding to the gluten-free diet, or that you may have another health issue.

[cruelshoes]

Can anyone tell me if after being diagnosed as a Celiac and you start going gluten free (apx. 3weeks) do you still have days when you feel worse than others for no apparent reason? I have been very strict with my diet because like most all I want is to feel better Is it normal to feel worse in the morning and better in the evenings. How about weight loss and weakness this seems normal from what I've read but after eating well, I'm still dropping pounds and very weak legged. Sometimes I feel like I'm going to pass out is this common? Are there any meds that can help?

I know three weeks is just a short time to expect big changes but I'm up here in Alaska and the Doctor that diagnosed me(biopsy) is hundreds of miles away and not spoke with me other than to say, "you've got it, I can set you up with an appointment with a Nutrisionist if you want." And haven't been able to even speak with him again. My apologies for rambling but I'm sure this will just be the first of many questions. How about personel care products, soaps, shampoos ect. can this effect me?

Are there any additional tests blood work or other you think I should have done? Thanks again.

Welcome to the gluten-free club! This diagnosis can seem like a daunting one, but, with time, it will become easier and easier. Has your doctor tested you for any underlying nutritional deficiencies? They are extremely common in one that has just been diagnosed. Some key nutrients you may be lacking are iron and B-12. Both of these can cause exhaustion if not found in adequate quantities. Additionally, you may want to consider a dexa scan to check for Osteoporosis/osteopenia. These conditions are quite common in recently diagnosed celiacs due to malabsorption.

The gluten molecule cannot be absorbed through the skin, rather, it must be introduced into the gut to cause problems. Having said this, I do not use any personal care products with gluten in them. What gets on your hands gets in your mouth. It just isn't worth the risk to me, and there are so many really great products out there that do not contain gluten.

HTH.

[Guest Doll]

Welcome to the gluten-free club! This diagnosis can seem like a daunting one, but, with time, it will become easier and easier. Has your doctor tested you for any underlying nutritional deficiencies? They are extremely common in one that has just been diagnosed. Some key nutrients you may be lacking are iron and B-12. Both of these can cause exhaustion if not found in adequate quantities. Additionally, you may want to consider a dexa scan to check for Osteoporosis/osteopenia. These conditions are quite common in recently diagnosed celiacs due to malabsorption.

The gluten molecule cannot be absorbed through the skin, rather, it must be introduced into the gut to cause problems. Having said this, I do not use any personal care products with gluten in them. What gets on your hands gets in your mouth. It just isn't worth the risk to me, and there are so many really great products out there that do not contain gluten.

HTH.

Thank you for mentioning that gluten cannot be absorbed through the skin, I have tried to convince some people of this in the past, but it always seemed to start a big debate!

Gluten is NOT absorbed through the skin! However, some people feel that the less they have to worry about the better. Some people do lick their fingers or eat with their hands (i.e. hand lotion) etc.

I personally don't care about topical products with gluten, and I am very sensitive to gluten. If I don't eat it, I don't worry...that's my motto, but that's what I choose to do of course. I *always* wash my hands before I eat (trust me, take a microbiology course and you'll know why ) with Irish Spring, which is a gluten-free soap and/or use cutlery. I don't chew on my hair, or run my hands through it.

The only thing I changed was my MAC lipgloss, which was not gluten-free. I still use all MAC makeup otherwise, and I don't think all of it is gluten free. I have not reacted once (I react severely to even cross-contamination).

Of course, there is nothing wrong with wanting gluten-free topical products. Those with a gluten allergy may need these especially.

[GFhopeful]

New too and a couple weeks ahead of you in the process - I've been gluten free for around 5 weeks. I too still have better and worse days but overall am having more good than bad. I don't know about you, but I've been pretty healthy my entire life and never really understood what a real illness is like until know. And that it can be caused by a food that I've eatne my entire life- it's mind-blowing. Anyway, what seems to have helped me most is eliminating all but fresh meats, rice, potatoes, veggies, and fruits. I'm not eating dairy or any pre-packaging gluten-free food as I was still feeling ill when I was eating this things. I did add eggs back in after trying a week or so without them and that seems to be going ok. Frequent meals are also helpful to feeling like I have energy. Lots of bananas. I do take a multi-vitamin but am going to up the vitamins, per a consultation with a naturopath yesterday. I am so looking forward to feeling normal more often than not. I plan on just adding foods back in slowly as I gain confidence and strength. Good luck - more good days are ahead.

[GFhopeful]

mornings definitely are worse for me too - don't know what that's all about but it's true for me - maybe your body is hard at work while your sleeping trying to heal?

[Suzanne]

I'd recommend you go off dairy also. Many of those who are gluten intolerant are also lactose and/or casein intolerant. It took me a year and a half for me to heal. Once you've healed you'll be able to go back on dairy items.

Suzanne

Can anyone tell me if after being diagnosed as a Celiac and you start going gluten free (apx. 3weeks) do you still have days when you feel worse than others for no apparent reason? I have been very strict with my diet because like most all I want is to feel better Is it normal to feel worse in the morning and better in the evenings. How about weight loss and weakness this seems normal from what I've read but after eating well, I'm still dropping pounds and very weak legged. Sometimes I feel like I'm going to pass out is this common? Are there any meds that can help?

I know three weeks is just a short time to expect big changes but I'm up here in Alaska and the Doctor that diagnosed me(biopsy) is hundreds of miles away and not spoke with me other than to say, "you've got it, I can set you up with an appointment with a Nutrisionist if you want." And haven't been able to even speak with him again. My apologies for rambling but I'm sure this will just be the first of many questions. How about personel care products, soaps, shampoos ect. can this effect me?

Are there any additional tests blood work or other you think I should have done? Thanks again.