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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Losing Too Much Weight
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13 posts in this topic

I am a type 1 diabetic. In July of last year I was in trouble and having wildly swinging glucose levels - I weighed 169lbs and was about 22lbs overweight and was on too much insulin but a set dose - the frequent hypoglycaemia was also adding to weight gain as I had to live on carbohydrates (mostly bread and biscuits and gluten full food) to keep my sugars up.

 

In August I changed doctors and was taught carb counting, started on a web site that advised low carb diet for type 2 diabetics and changed my diet to a lowish carb diet (about 100-150g of carbs per day, still including gluten containing products) I had lost about 15 pounds by December.

 

In December I asked a nutritionist about how diabetes and PMDD could be related and discovered that all auto immune conditions I had including asthma and hypothyroisim could be related and that the relation is often celiac disease or gluten intolerance. I stopped gluten and then dairy and soy too and began to feel much better - the asthma went away entirely and the weight loss continued. By end January I had lost about 30 pounds and was now trying to get the weight loss to stabilise. My sugars were much better controlled, my gastrointestinal issues (I suffer from severe constipation) had improved and my mood was a bit better.

 

Now at the end of March my weight is still coming off. I am on a starch free diet as I have had such trouble with my moods and they think I have SIBO. I also eat very little fruit. I still have severe insulin resistance around the time my period is due to start and still have PMDD. I now weigh 132lbs and this is too little - a person I work with yesterday told me straight out that I have lost too much weight and I agree with him. I never went on this diet to lose weight even though I needed to. I no longer get hungry though - I am scared of food because of some severe reactions I have had in my mood when certain foods have got into my diet.

 

I have been told to increase nuts, avos and nut butters and olive oil and I have, but it has made no effect at all - I continue to lose weight. I am debating asking for a referral to a gastroenterologist, but I am not sure that is the right doctor. I am worried that the doctors are going to think that this is psychological - that having lost so much weight I have become anorexic - I have not - I eat three full meals a day and snacks twice a day and my husband even asks me how I can eat so much at once (it is the vegetables I think).

 

This diet has not done for me what I had hoped - my moods are not improved as much as I want - they do think I am celiac and they cannot prove it now (by genetic studies I would be as all type 1 diabetics apparently would be since the genes are linked) and I cannot go back on gluten to have a test. So now I feel very stuck and am not sure what to do next. Any help would be appreciated.

 

 

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Welcome!

 

Anyone that moves from mostly grain carbs to a mostly whole meat and veggie diet is going to lose substantial weight over eight months. I lost 40 pounds when I was finally diagnosed -- granted my weight had increased over decades without any known cause -- lots of exercise along with a pretty darn healthy diet.

 

I am not clear on what changed from you improving with many aspects of your health in December to now.

 

Perhaps the best advice I can give you is listen to your body and not someone's opinion on the amount of weight you have lost over the past eight months.

 

Hang in there :)

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What is your BMI? If it is not below the healthy range, then you are okay. People are so used to seeing heavier people and quick weight loss is concerning.

I am pre diabetic and and following a very low carb diet. Am just eating to my meter. I have lost some weight but I am still the healthy BMI range.

Here is a yummy tip, refined coconut oil added to your coffee (1tsp.) and is you can have dairy, switch to heavy cream --not half and half.

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My BMI is now 20 which is supposed to still be acceptable, but the weight loss continues and I do not want to wait til I am at an underweight BMI before I do something about it. I do know I have lost too much weight - I look in the mirror and know it myself. I was happy about 6 pounds up from where I am now but had actually intended to stop losing weight 12 pounds up from where I am now.

 

I have suffered from constipation all my life which is possibly why no one suspected celiac - in fact the nutritionists I see in person for the diabetes tell me you cannot have constipation and celiac which I know is not true. Despite the diet I still struggle with this - maybe I have gastrintestinal transit problems and maybe that is related to the diabetes - who knows? I do know that if I get that better then my mood is better, but I have no idea how to improve it - the diet and drinking a lot of water should have helped and it hasn't.

 

I guess the trial and error will just have to continue. Of course my monthly cycle plays havoc with everything - with the insulin needs, with the constipation, with the depression so figuring out what is caused by what can be a nightmare. I am quite stressed as my insulin is about to change to a pump and I know I am about to have people tell me that I need to change what I am doing as I do not fit the usual basal pump profile either (I am on about 70-80% basal per day when they are used to about 50%) and they will attack the diet and tell me to go back on carbohydrates that ruin my mood and my increase my insulin resistance drastically. 

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Your BMI is still acceptable. Again, I would not panic over it.

I am following a low carb, high fat diet to control my diabetes. I am just pre-diabetic and am not on insulin or meds. I will go in another month so to determine my type. There is a good diabetic forum that supports a LCHF diet.

Are you a meat and fish eater? I read that you eat lots of veggies and that is great! Can you provide a sample of what you eat on a normal day? The key is getting calories from fats. I assume that is what you are following. Do you take a fiber supplement?

How long have you been diabetic? This can affect your digestion. How often do you test your glucose on a daily basis?

Remember it takes months or years to heal from the effects of gluten, so you might just need more time regarding your constipation issues.

Hang in there! There is a solution!

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Yes I do eat meat and fish.

 

Most days I eat an egg for breakfast with some left over veggies from the night before.

For lunch I usually have something like a tuna salad - tuna, cucumber, possibly a bit of apple (never more than half an apple), a few nuts

Supper is meat of some form with vegetables in some form.

 

If I snack then it is on nuts usually.

 

I test my sugars 6-10 times a day depending on the availability of testing sticks. I've been diabetic for 23 years now.

 

I took all starch out of my diet last month and reintroduced rice (I ate 2 of those tiny rice cakes - the mini snack ones) on Saturday - I spent the night throwing up and have felt ill ever since - there was definitely no gluten or dairy involved. I didn't really eat much at all for three days and have since gone back on the strict veggies, nuts and meat diet I was on and things are slowly improving.

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Sounds like a good diet for blood sugar control. I would test rice again (though it spikes my blood sugar) but in a whole form. You may have been glutened by the rice cakes, unless they were certified gluten-free. Cross contamination is always a possibility with processed foods that share a line. Manufacturers are getting better about disclosing ingredients and statements like "made on equipment that processes wheat, milk, nuts......" But the risk, though slight, is still there.

Again, your BMI is good. Keep up with adding fats to keep you full and to add calories without a rise in blood sugar. I am drinking another cup of coffee spiked with refined coconut oil that does not change the flavor and it is really good.

Be sure to exercise and lift weights to help build curvy muscle! Moose Malibu is an expert in this area!

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Could you get help from the nutritionist to calculate how many calories you are eating per day? From your description it doesn't sound like many calories, although it would depend on serving sizes.

(I sympathize, my BMI is lower than yours. The only way I can gain weight is to eat when I'm not hungry, and eat plenty of peanut butter).

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The calories are too low - I think I get to 1200 with effort which is why I snack on nuts now. I had problems with a certain peanut butter I tried so have cut that out too - though cashew nut butter and other nut butters seem to be ok and I use those too at times.

 

Rice has seemed to be a problem numerous times - not just with my sugars, but with my mood as well - white rice is absolutely out, they suggested I test brown rice, but even that seems to do "something" (hard to say exactly what it is) and it does spike my sugars so any testing I do is always less than a tablespoon of it.

 

I am wondering if I shouldn't treat myself for intestinal parasites as I feel I should have seen more improvements based on the all the dietary changes I have made - the only other way I can go with the diet seems to be to cut out eggs and nuts (the rest of it has already been removed from my diet).otherwise something else is going on too.

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Not enough calories! I consume over 1800! I have to have enough energy to run, swim, and ride. That means eating hearty meals.

Here is what I eat on a daily basis and note that I am also diabetic:

Breakfast: salmon, green beans with some crumbled bacon and olive oil, coffee with coconut butter added for extra fat calories

Lunch: Salad with veggies and my homemade dressings, grilled chicken or fried, yes, fried pork chops,

Snacks: peanuts or peanut butter or sunflower seeds with veggies, bacon, piece of meat or fish, sugar free jello (hubby and kid get fruit and whole whipping cream too, but I am allergic to milk, tree nuts, eggs and garlic.....

Dinner: Lamb chops, artichoke, grilled zucchini, mashed califlower with coconut oil and soymilk, strawberries eaten with high fat dinner

I do eat Gu when I am on my long rides along with peanuts as I need the carbs then.

I eat until I am full. I eat if I am hungry. The only downside is that I cook a lot. The upside is feeling great and strong!

Do not forget that if you do have a gluten problem, and from your posts you suspect that you do, it can take months or years to heal. Unfortunately that is the danger of not getting properly tested. It makes it harder to stick to a gluten-free diet. My husband is not formally diagnosed, and it took him a year to figure the diet out and to finally feel better. We sure wish our two doctors back then had not suggested going gluten-free without testing.....

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Hi Tanikit,

 

I think you have lowered your insulin since going gluten-free?  That might affect your weight if you are taking too much of it.  It's great that your glucose response has improved since going gluten-free!

 

You are right that poor glucose control can cause slow digestion.  Some other things that might be worth checking are your thyroid function and nutrient levels. Actually I see you already know you are hypothyroid.  That is a possible cause for constipation too.   Have you been tested for TPO antibodies?  They are the antibodies that are active in Hashimoto's thyroiditis. Hashi's can cause hypothyroidism.     Celiacs are often low on certain vitamins at first.  B- vitamins seems to be one of them and they are important for nerve function.  B-12 seems to be a hot one to to supplement.

 

I don't know where you are located, but you might be able to find Food for Life gluten-free rice tortillas.  They are made with brown rice and are a nice enuff sub for bread.  Mission brand corn tortillas are also gluten-free.  Almond flour is protein vs carbs so might be a good way to go if you are willing to do a little baking.  Quinoa is another option and teff.

 

Eating lots of protein is a great idea.  I know you have been gluten-free for a while now, but maybe something in the tips below will help.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Thanks - I am almost never hungry - it is usually related to low sugar levels if I am and then I eat dextrose tablets. I have been gluten and dairy free 4 months now and have been pretty strict about it though my husband is eating gluten so the possibility of cross contamination does exist - even so I am very very careful about that too.

 

I do also fry food a fair amount but possibly should add some coconut cream or oil to salad to increase the calories from fat. I find any carbohydrates at all are causing gassiness and bloating and digestive upsets now - even in miniscule quantities. I have eaten a little potato (like one small piece - 1cm in diameter) recently and even then I am not sure the results are quite what I would I like - that little does not affect my sugars, but I am very wary now.

 

Thanks for the list - I probably need to get back on board with a few things (like taking vitamins and minerals more regularly - they get forgotten some days amidst all the other meds I have to take)

 

The reactions I have to certain foods I eat now is so strong that I will not easily be tempted to go back on gluten or dairy or soy - literally within two hours of anything slipping in even in the smallest quantities I know all about it. Thanks for the encouragement. I am about to start an insulin pump in 9 days time and am hoping that will help some too though I think the dieticians are used to high carb carbohydrate counting - eating 5-10  carbs per meal means that my insulin ratios are different to what they expect because of the protein. 

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Good morning Tanikit!

 

I'm undiagnosed and I don't have any medical advice in terms of glucose levels, but I did want to check and see how you were doing in terms of BMI.

 

 

My symptoms haven't significantly changed just yet, but for me personally almond butter, olive oil, bacon, and avocados with healthy proteins have helped.  As a guy it can be scary for your coworkers when you lose 20 lbs in 5 months with no change in diet, i can relate!

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