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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Blood Sugar Issues

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First post on this forum. This whole post is probably better directed at my doctor, and some/many of my questions could be answered by using the search function. That said sometimes rehashing old subjects can bring new ideas or knowledge out. Also the collective knowledge on this board is probably much better than that of my doctor.

I guess it’s best to start with my story. I was always overweight, I was the fat kid that grew into the fat man, I am now 33 years old. About a year and a half ago I moved from a smallish town, where I was not very happy to live, to a bigger city and started exercising and dieting. In about 9-10 months I managed to go from 113 kg to 85 kg, I felt great and was fit. I climbed Norway’s two highest mountains on consecutive days. 85 kg at 190cm tall is about right, so I decided to change my diet back to a more normal one, hoping to stabilize my weight. So I started eating much more white rice, bread and pasta etc. I also started having stomach problems and my weight kept dropping. Long story short I have Celiac disease. By the time I got the diagnosis my weight had dropped to just below 70 kg, where it still is today about one month into my gluten free diet.

During the period where I was sick but undiagnosed, I was struggling with my appetite. I was also experiencing nausea, especially in the early morning and in the late afternoon. To be honest I used weed to dampen the nausea and stimulate my appetite, and that worked pretty well. I realize that smoking weed is stupid and I have stopped over a month ago. Since quitting gluten I no longer have nausea, but now instead I fell myself getting hungry a few hours after each meal. My appetite has returned quite strongly and I’m eating large portions every meal. Three times now I have also experienced that I had an almost insatiable appetite in the evenings after a large dinner. Another thing is that the other day I made the passing observation that I was peeing more often.

Now reading up on these issues, I can’t help but be worried about diabetes. The only family member I can think of with Diabetes is a cousin who recently was diagnosed with type 2 diabetes, after having been obese for as long as I can remember. As far as I know type 1 doesn’t run in the family. But I am also the first in the family to be diagnosed with celiac disease, so who knows.

I tried calling my doctor yesterday, but it’s winter holidays and because the weather and snow conditions are perfect, the entire country has essentially shut down. he will be back Monday, and I will get an appointment sometime during the week.

I guess what I’m hoping for is some clarity. Right now I’m pretty worried, the thought of having diabetes is pretty depressing to me. Not knowing really sucks and it’s costing me sleep.

My blood sugar symptoms started when I started eating a lot of gluten and starch after my diet, and then changed when I went gluten free. Could the current symptoms be temporary, or maybe something other than diabetes?I read that there is a link between diabetes and celiac disease, but that it is the diabetes that is usually diagnosed first. Should I worry less, or try to get used to the idea that I’m diabetic?

I also have a few other questions/rants:

First of my hair is falling out, I used to have a very thick head of hair but not anymore, it’s thinning fast. This started when I went gluten free, how much worse can I expect it to get? I read other threads about hair loss and apparently it sometimes grows back. How likely is that, and how long does it take? Ballpark estimates would be great. Also is there some kind of medication for this that I can try?

My energy levels are still pretty low, and I have noticed that the color of my poo is still light brown not proper “poo color”. Iron deficiency maybe? Any advice?

Since my celiac related weight loss came right after a big diet, I really didn’t have much fatto loose, and most of the 15 kilos were from muscle. I really hate being this thin and this weak. I would like to go back to the gym to build muscle. My question here is, how long before I can start to digest my food well enough to gain muscle? I have started working out a little, but honestly it has been a pretty depressing and frustrating beginning. Last time I did bench-press, I barely managed three sets of very low weight. A little later I noticed a girl well under a foot shorter than me bench pressing the same weight and making it look easy :-(

Also what type of foods should I be eating to keep my blood sugar more constant, should I avoid all white carbs? How about fruit? I eat gluten free oats with lactose free yogurt and a couple of hardboiled eggs on the side in the morning, is that a good idea? I had that at 6:30 and its now 10:00 and I’m hungry again. Also I find myself snacking on almonds a lot, should I worry a lot about the fat content of my food, or let it slide a bit? If I start getting fat again, that would obviously change things.

Using the search function I came across some comments about digestive enzymes as a supplement. Could that be a good idea for me?

Last summer I was so happy with my body, being fit after a lifetime of being fat and unhappy with my body was so nice. Now I’m unhappy with my body again and worried that it might get worse.

Thank you for taking the time to read all this. Any and all comments and answers

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I find myself the most hungry when I eat starchy or processed foods. If I have (gluten-free) pancakes for breakfast at 8:00am I am hungry again by 11:00 but If I eat a fritatta (eggs and greens) I am not hungry until the afternoon. I'm a big believer is not limiting your good fats and getting adequate protein. I think starches (rice, any flours, potatoes) are all bad for me and don't offer my body much that it can't get from subsitute sources (meats or greens). A diet like this will keep you lean but not skinny as long as you consume adequate calories. (I am not a excpert on nutrition or medicine - just based on my own research and experience).

 

I also lost some weight after starting the gluten-free diet, it's not unusual. I am pretty sure that much of my weight loss was due to inflammation coming down and my body settling into a new way of eating... has your weight loss stopped now?

 

I doubt you have developed type 2 diabetes, especially after reaching a low weight like that, but if you are concerned, see your doctor about it. Type 1 diabetes is linked to celiac disease (both are autoimmune disorders) and could be a possibilty. I would see a doctor just for your peace of mind.

http://www.nlm.nih.gov/medlineplus/ency/article/000305.htm

 

Holy Basil is a supplement that will help keep your blood sugar at a more even level. It's best to take it a few times a day before meals... It's not a diet supplement and will not affect your appetite in any way.

 

Is it possible that another problem has come to the surface now that your body doesn't have to deal with gluten?  It sounds like you have muscle weakness which is a symptom of many things like fibromyalsia, chronic fatigue syndrome, Hashimoto's thyroiditis, and others. When you see you doctor, you might want to check your thyroid as Hashi's (which is hypothyroidism with some hyper thyroidism) is very common among celiacs. It also causes hairloss, fatigue,pain,  weakness, depression, weight changes (usually it's a gain but not always) and foggy thinking.

 

Have your doctor check your TSH (close to a 1 is good), Free T4 and Free T3's (should be in the 50-75% range of you lab's reference range), and TPO antibodies (should be about nonexistant). While thyroid issues are more common in women, having your metabolic hormones under or over producing can wreak havoc in your body.

 

As for the hair loss, I have found that it does grow back after whatever autoimmune "attack" you are under finishes. When I went gluten-free, within 2 months I noticed a bunch of short regrowth (it looked like tiny hairs had been broken off at my hair line and part). I then had an autoimmune attack (Hashi's or something else) and lost lots of hair to the point where, as a woman, it was getting embarassing. Once that attack passed in a few months, the regrowth started again so I now have a bunch of hairs 4 inches long from the previous regrowth, and more hairs almost 2cm long from this most recent hair growth.  I'm not sure if it will come back to the same amounts i had in my youth but it is definitely better than it was.

 

Fish oils, Biotin, and Biosil are all products that will help strengthen your new hair growth. I'm not sure if it will speed it up.

 

Hang in there, and let us know how it goes with the doctors.

 

ps. I understand about the joy of mountain climbing. I live right beside the Rocky mountains in Canada (near Banff) and I make of point of hiking tall peaks when I feel well. It's such a great feeling to stand on the top and see for 100's of kilometres... :)

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Welcome to the board. It isn't uncommon for folks to suffer hairloss after an illness or bad stressor. It will usually start to grow back after about 3 months or so.

It is also normal to be very hungrey for a while after we are first gluten free. Your body was deprived of nutrients and now that you have been gluten free it is trying to pack them in. At least from what I understand.

Do have your doctor check for diabetes for your own peace of mind. However if you are eating more you are also likely taking in more liquid which would lead to an increase in urination.

Try to go with whole foods and if you concentrate on protein, fruits and veggies etc more than carbs that might be a good thing. Also some of us are sensitive to gluten free oats. It is best to wait a few months to test them. When you do if you can eat them a couple times a day every day and watch for a reaction that should let you know if they are something you tolerate. If you live somewhere that Codex Wheat starch is considered gluten free watch out for it in your gluten-free products and do avoid it if you can. Many of us wouldn't touch Codex with someone else's hand.

It will take a bit of time to heal. Don't get down on yourself about the loss of muscle mass. When you were eating gluten prediagnosis you likely were not absorbing protein well from your food so your body had to get it from somewhere. You will heal and until you do pay attention to your body as far as excercise goes. Do what you can and eventually you will get back to where you want to be.

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