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Posted 8/29/2011 3:19 PM (GMT -8)
Is it normal to be very hungry at the start of a gluten free diet? I have been overly hungry the last couple of days, and I have not cheated! Will this subside and is there a reason?

Thanks Cindy
Posted 8/30/2011 12:48 PM (GMT -8)
Cindy, you should be able to find plenty to eat that does not include gluten. I did find that breakfast was hard for me. While most with celiac disease will be cautious with oats, I have been using gluten free oatmeal from the beginning to give myself a hearty and filling breakfast.

Of course, you won't be able to snack on processed foods and most fast food is going to be hard to do. You'll have to prepare your own food more than you did before. All of this is better for you anyway, gluten free or not.

Nuts are a great source of protein and are very filling. Try that for an easy snack when you get hungry.
Posted 8/30/2011 1:52 PM (GMT -8)
As being diagnosed with CD, I am careful about certain items like raw corn and nuts..I have brought my own food from home and cooked gluten free since Friday..I did browse different websites like Wendy's and Heinz ect to check on certain things..I usually am not hungry and now I am..My husband thought it was the "filler" component of gluten..I have been trying to do more whole foods without setting things off..So far, I have not had a problem..Is it true you should stay away from oatmeal and milk products in the very beginning, though..??
Posted 8/30/2011 3:09 PM (GMT -8)
It is possible you are going through gluten withdrawal.  I did for three weeks - many do.  I felt famished at all times (for the first time ever had to get up at night a few times to eat), got migraines and generally felt quite ill.  Perhaps this is what you are going through.

My dietitian and a celiac specialist strongly recommend avoiding even certified GF oats for two YEARS after diagnosis.  It is not a gluten thing but rather to give our guts time to heal.  After my being strictly GF for nearly six months now I have just found out I am now also lactose intolerant.  Grrrrr...I LOVE my cheese.  But just to encourage you my tTG number went from 71.0 (waaaayyyy off the charts) down to 3.8 recently.  Anything below 7.0 means "negative"!!!!  Awesome news.  So, it can be done.

In addition to oats I recommend eliminating dairly for the first two or three months if you can.  I teach culinary classes so if you are looking for snack/meal ideas or recipes I would be happy to help.

Hope you feel better soon!

Posted 8/30/2011 4:56 PM (GMT -8)
Chanterelle, I don't think Cindy was diagnosed with Celiac - although I'm not sure. She and I both have Crohn's and have opted to eliminate gluten. I am sure that I do not have celiac, just gluten sensitivity. The GF oats have not bothered me a bit.
Posted 8/31/2011 10:25 AM (GMT -8)
I have never been tested for celiac that I know of or for any food allergies. I was first diagnosed IBD unspecified..Due to the inflammation being not regional to the large intestine, the doctor stated Crohns later..I have all the Crohnie ailments that all are on the celiac list?? I was on a high carb simple sugar diet for sometime because it was all I could tolerate..The main drug I am on now is predisone basically three years running with a large weight gain but able to eat fairly well..Anytime, I have ever tried probiotics or anything with a high fiber content it has made me misrable..I would hate to think I am celiac and not CD and all I needed to do was change my diet..There are many Crohnies that are helped by gluten free and SCD diets..I can handle milk products(cheese, cottage cheese, sour cream) but not straight milk??..I have almond milk in my fridge at home. I have not had oats but have milk products the last six days..I have gotten into fresh fruits and veggies that I have had problems with in the past..I want the full effect if this diet, and the only thing I have noticed is immense hunger so far..I have noticed that the gas, bloating, oily film in the toilet has drastically improved so far..

Cindy

Posted 8/31/2011 10:57 AM (GMT -8)
Cindy, there are a few ways for your DR to test for celiac, but the gold standard is to biopsy the tissue in the upper GI via endoscopy. If you go on a gluten free diet and THEN ask for the biopsy your DR will not be able to tell if you have celiac disease.

I would say that gluten sensitivity is not a food allergy. The digestion of gluten is quite complicated biologically, and involves enzymes you produce (and that celiac sufferers do not) PLUS the work of beneficial bacteria in the gut. One theory of the increasing rate of gluten sensitivity is that the population of beneficial bacteria has somehow gone awry in some people, diminishing their ability to digest gluten.

Other studies have shown that the population of beneficial bacteria in the guts of people who have UC are different from the bacteria that live in the guts of people that have CD, which are both different from the bacteria that live in the guts of people with normal digestive function. Additionally, there is some thinking that perimenopause changes the body chemistry enough to affect this population of bacteria, and thus making it more likely that middle aged women will become sensitive to gluten after a lifetime of happy bread eating.

So that's why I adopted a gluten free diet. Because I am certain that I have an inflammatory bowel disease, and even though I take my meds and have no blood or inflammatory factors in testing, I was still not feeling well. Eliminating gluten from my diet has eliminated a lot of the problems I was having, so I'm glad to have made this change.
Posted 8/31/2011 2:06 PM (GMT -8)
I did have an upper GI back when I was having the most trouble 05'--I had severe gastritis, esphogus, and small intestinal inflammation--I remember them telling me the biopsy came came back with no H-pylori or cancer..It was all bloody through there and they could not tell me why and changed my diagnosis from unspecified IBD to Crohns..They may have tested for it at that time..I called my doctor actually today, and he was not concerned about it other than he told me to try the diet and to see whether it helps that it would not hurt me..I ended up perimenopausal in my early thirties which is when the major flare up occured! My glands got hit as well as my kidneys at that time..I am on thyroid medication,blood pressure, and predisone for medication nothing else currently at 41 with more IBS type symptoms that plagued me before my big fall out. I was having a real problem with bacteria overgrowth as well with infection back then in my intestines? I had a resection and gallbladder removal in 2004'..I was on all kinds of antibiotic combos, anticoalergenic, antispasmotic, anti-acid drugs than I am not on now..I was able to dump all the rest of them with predisone??
Cindy
Posted 8/31/2011 3:06 PM (GMT -8)
If your DR did not diagnose celiac after that upper endoscopy, then I would say you do not have celiac. Your DR sounds like he agrees with that, but encouraged you to try a gluten free diet anyway. Mine did, too, and I'm glad I tried it because it has really helped me.

What does your DR say about you being on oral steroids for so long? That is worrisome.
Posted 8/31/2011 5:14 PM (GMT -8)
I have been concerned but the DRs are not willing to do anything except the current one suggested a slow self tapper off 1mg at a time if tolerated..I have gotten to 7.5 and 5mg before..I am stuck at 10mg right now..My doctor seems more concerned about bone loss and wants a bone density test next month..I get below 10mg and the joint pain and gastro symptoms return..I have not been on antibiotics like sulfazine, cipro, or flagyl since February..I have been off all other stuff for over a year..I do take phenegren for nausea as needed..IBD was diagnosed in 05'..I see alot of Crohnies doing SCD or Gluten Free..My blood work has looked good over the last two years except for free flowing fats..My white blood cell counts especially certain counts like (eosinophils) go up when actively flaring..I have not had this in two years. My son was diagnosed with IBD at 18 with his intestines backwards in his body but functional..He also has severe skin issues and joint pain so I suggested a try of Gluten Free to him..My father was UC..
Cindy
Posted 9/1/2011 10:17 AM (GMT -8)
Well, I hope that eliminating gluten will help get you off prednisone.
Posted 9/1/2011 3:52 PM (GMT -8)
Everything helped the symptoms at times but nothing was stopping the disease process..Predisone was the only thing that got things going in the other direction. I was terrified of steroids and immune suppr. drugs..I started relying on a low residue diet for awhile and eat alot gluten filled carbs..I wonder if I would have gotten better if I had gone gluten free before predisone dependence..I have been feeling better and have stopped being gassy with the oily film coming out this week..I am eating more food than normal..I have noticed I have been more alert and less foggy this week. What differences are you noticing?

Cindy
Posted 9/2/2011 6:10 AM (GMT -8)
Those are exactly the differences I noticed.

I do not believe gluten is a part of my disease process, but who knows. I simply think that it was causing unpleasant bowel symptoms (like lactose can do). I was really surprised about the better mental functioning though, and for a while there I felt like telling everyone I know to go gluten free for better thinking! LOL!
Posted 9/2/2011 7:30 AM (GMT -8)

Many of the symptoms of CD and celiac are similiar. I had all the same symptoms of celiac and was diagnosed as crohns..Have you been concerned with the cross contamination thing? Can you really be in trouble if your husband kisses you after eating toast..Have you gone as far as examining your toothpaste yet, what brands are safe? I did not examine the butter for my potato for toast crumbs?? I am going to go pick up some gluten free bagels or bread this weekend, what brand is the best? I have stuck to the gluten free diet for a week so far..I am not finding it restrictive so far..If I want bread or noodles, I can go get some gluten free ones, what I have come up with is you can't just run through a drive through..I did eat at Wendys yesterday and had a potato, chili, and a frosty which all are suppose to be gluten free!! At my worst with CD, I could hardly eat a thing without pain..I was very sick 04-07..I did want to leave home due to the big "d" getting me trapped somewhere..

Cindy

Posted 9/2/2011 8:07 AM (GMT -8)
I do not believe that small amounts of gluten are harmful for me. I do not worry about touching bread, or kissing my husband. I have had small bits of gluten products (pain chocolate, blueberry muffin, crepe - tiny bites of each) without problems.

I have eaten restaurant food that I've tried to ascertain as gluten free and had a horrible time the next day. So I am very careful now with eating out.

I have liked Schar brand noodles the best. I am eating Udi's gluten free granola now, and Bob's Red Mill GF oats. I have tried some gluten-free bread but don't particularly like it. I just bought Glutino's GF pizza crust yesterday and stuck it in my freezer for the future. I do like Mary's Gone Crackers for a snack with cheese on top.

The Crohn's Disease, or IBD, that I have showed up on scopes. I am certain that I do not have Celiac disease. But I have consistently complained to my GI about upper gastric problems, and he offered no medical solutions. So I tried eliminating gluten and those problems have largely resolved. I still have motility issues and I just started using Senna at a very low dose to help that. So far, so good.

I am not planning to stop taking my Crohn's meds any time soon, but I do plan to talk to my GI about reducing the Pentasa to see what happens. It's making my ears ring and I don't like that. I might talk about a switch to Asacol, which shouldn't cause this problem. I started treatment for IBD first with Asacol, but it didn't solve the whole problem. Pentasa did a much better job, but still left me with some upper GI stuff. So now that I'm gluten free I think the upper GI stuff is going to be much better off Pentasa. We'll see.
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