26 replies to this topic

[JNBunnie1]

I am 5'8" and was down to 103 lbs when I was sick, it was icky and I totally feel your frustration Lola. It sounds like you're pretty close to normal range for height & weight, and that will resolve itself with time. You may be surprised, I still haven't gotten past 135.

The hungry will get better. I have found there are certain food combinations that help me feel the most full. Winter squash is very filling. Dark meat chicken and sweet potatoes for dinner works really well for me. Meatloaf and potatoes works good. Try sticking to eggs for breakfast, or just eat dinner food for breakfast. I love soup for breakfast. Normal cereal/muffin/danish food, even though it's gluten free, will not serve you well right now.


And that's a gorgeous pup!

[Really good scratcher]

I feel overwhelmed as well. It's all really new to me too. Last year right after Thanksgiving--as I always host for our family, I had a terrible break out rash. Had the rash prior to that Thanksgiving, but that was the real date in my life I finally figured out for myself it could all be Gluten Related disease. I woke up in the middle of the night with my skin just burning! I put cold ice packs and cold wash cloths on my skin three times during the night. Of course I purposely ate everything gluten I could, including Home Made Bread from scratch. I have usually made home made bread for special holidays for years and years. My family and friends love my home made breads and biscuits! I love my home made bread and biscuits too! Both of these include real yeast after it has been activated. It always TASTES awesome. Now it should be never more. Sigh. I am trying to get over this. My skin rashes are horrible. They itch with an intensity that is amazing even to those who know what this is all about.
I am still rather overwhelmed as to what this disease does to us! I am so amazed as to how long and hard it has taken to diagnose! Three Years plus!! And I think I have been suffering many years prior to this skin outbreak from three years ago.
I feel for you! You ARE NOT ALONE! Many of us suffer unknowing why and for what reasons! We puzzle as to why this is happening to us! Our doctors are scrambleing as to why we are suffering these symptoms!
Last year after my Thanksgiving breakout, I went to a new dermatologist. He and his partner took one look at my red, blistery, patchy, symetrical rash all over my body and they both thought it looked like "The Celiac Rash". They took scrapings and biopsies. Guess what. They came back negative for Celiacs!!! Because the results of the blood tests and the biopsies came back negative for Celiac's, I thought, Good! At least I don't have to go Gluten Free!! At that time I also found out the biopsies they took showed allergy to Sulpher. At the time I was on a sulpher based drug for water retention. I was taken off that, and put on Prednisone. Those two things started to clear up my skin. I thought, good! I can still have my beloved wheat products. After the Prednisone drugs wore off, guess what? My skin rash came back with a vengeance! Itch, itch, itch!!! Dang it!
Rash, scratch and itch! Hence my sign on name: Really Good Scratcher! I can scratch anything and any where just to relieve this annoying itch! I have the best tools for scratching this annoyingly itchy skin! I find I can't get relief until I scratch myself silly and I am probably leaving huge areas of my skin to be scarred permanently.
Yes I am totally overwhelmed. It is very daunting to change a lifestyle of eating habits. I have been told all I can eat is celery and water. Wow, that is very appealing. NOT!
Still, I am open to suggestions, advice and shopping lists. The lifestyle changes I must make will be very hard, but I am willing to try. I would just love my skin to clear up and STOP ITCHING!
Overwhelmed? Most certainly! But I bet we are not alone!

[LolaB]

Thanks everyone for the posts and JNBunnie1 thanks for the compliment on my puppy, she is adorable and her name is Lola      This site has helped me a lot, and I have learned so much and appreciate all the responses and support.   Sorry for Really good scratcher - hate to say this but I never experienced the itching skin, but that sounds very annoying!

[Pam Larsen]

Hello everyone, I am also new to this site and a wife to a husband with Celiac. He had been sick for about 12 years and mis diagnosed many many times. Finally we had a niece we were talking to and she has it and we talked symtoms so of course my husband went in for a blood test. They called back and said he tested positive. They wanted to schedule him for a biopsy. We have a very large deductible so I asked them if it was positive would the treatment plan be different. They said no so I said no to the test. He has been gluten free since June 10. He was also very thin because of the lack of nutrients. He has now gained about 20 lbs. and doing awesome. I shop and make sure he has staples but he is good to cook for himself. I work out of the home and he is a farmer so he is around for all his meals. Sometimes I come home and he has had rib eye steak for lunch. We try to keep things simple. Meat, potatoes or rice and veggies. He loves potatoes and eggs so he eats them lots. I do love to bake so I make him treats every now and then. He doesn't like gluten-free bread or pasta. He would rather go without so we do. He also likes to snack on granola and I pack it with as much protein as possible. He eats like there is no tomorrow. He says he just can't get enough food but he has gone for so many years with no appetite and now he is back the way he was in his 40's. We raise beef, pork and lamb. I have 3 freezers so he eats alot of proten.

He doesn't take any supplements because he feels so good. Before this I was always making him take a handful of things just to try to keep his nutrients up. We are going to go a year and then have his blood tested at our local health fair and see where his levels are. I know they will be good just because he looks and feels good. good luck to you and remember to keep it simple.

[GFinDC]

Hi ReallyGoodScratcher,

Have you checked into the DH (dermatitis herpetiformins) section of the board? They usually reccomend avoiding iodine in the diet when the rash is present.


Hi Pam Larsen,

You sound like a great wife! Being very hungry is something that tends to happen to some people for a while after going gluten-free. Has your hubby been tested for vitamin and mineral deficiencies? That's a good thing to check into as untreated people usually have some deficiencies at first. Stopping the vitamins might be ok but perhaps it would be good to check those levels too. Sounds like you are doing things right tho, so that's great.

[dreacakes]

Oh, I feel your pain my dear!! It's so hard having debilitating health issues for YEARS and not knowing what's causing them. My stomach hurt every single day, and I had so many health issues that I went to so many doctors to treat... and none of them ever helped.

I'd HIGHLY suggest seeing a holistic nutritionist ("holistic" being the big emphasis!)
I went gluten free three years ago, still felt sick for the first year, and stumbled around not knowing what exactly to eat that would help. I thought that just being wheat gluten free would help, but that wasn't right! Eventually I went to a naturopathic doc who I found on this website (which is not only for thyroid conditions, but all auto-immune disorders) http://thyroidbook.c...er-locator.html
He put me on a diet that helps heal the gut, and treat other conditions like candida that may be present. Also, finding out what nutrients you're deficient in is really useful, because then you know what kinds of things you need to eat in quantity.
Just going wheat gluten free doesn't do it for most people. Often because of the damage done to our intestines we have way more food sensitivities. Also, ALL grains have gluten in them, so if you keep eating grains, it will keep irritating your digestive tract. A full elimination diet is the best way to start, since then you can cut out everything that is keeping you from healing.

This is a crazy new gluten free world you've come into, but don't despair!!! Health is on it's way, just have patience and listen to your body.
The best of health to you!

[LolaB]

Hey everyone!  I have been gluten free since Sept 22/2012, but do believe I have been "glutened" twice, once after hot chocolate which btw looked perfect to make, minus the milk of course, but no I was wrong.  Wayyyyyy wrong, I also added a tiny bit of "lactose free" cream to it and boy was I sick! omg! the cramps were INSANE.....anyways, I know it was the cream since I have had a really hard time with milk so far.  But I can eat cheese? weird! but, seems this past weekend I have been feeling like crap (lol) tired, stomach bloated, sore feeling, not good stools, over all not well. I do believe these are symtoms of being in contact with gluten.  My question is ....... I have not felt hungry, I make myself eat, but have no appetite at all!  has anyone else felt this way? I wonder if it is because I feel so crappy? Please help!   I did eat a "gluten free" loaf my neighbour made for me, but her kitchen might not be as gluten free as mine and that could be where I got glutened from.  This loaf was made Friday, today is Monday and for the past few days I am been feeling ill.  Any chance it is the loaf?

[mushroom]

Every chance, I would say Others' 'gluten free' cooking can be one of our biggest hazards. Just think of all the lengths you went to to degluten your kitchen, and then think of that loaf being made in a regular kitchen and all the opportunities for gluten to hop in along the way. Off utensils, boards, pans, contaminated ingredients...

It is wonderful that friends will go to that effort for us, but it can also be dangerous to our health if they do not fully comprehend what it takes to make something gluten free. It is perfectly natural for people to think, "No gluten ingredients, ergo gluten free." But we all know this not to be true.

Hope you feel better soon, and recover to have a wonderful Christmas.

[LolaB]

Hi everyone!  I am back! diagnosed September 22/2012 was doing really well until this Christmas, seems like I still do not feel well.  Bloating, D, cramps, pains over all my bowels are not well.  I have been on a strict gluten free diet, slowly starting eating chocolate again (wonder if its that) and my weight has stayed the same just a slight drop ( I weighed myself this morning)  I wake up with a funny stomach or heart burn ..... I am worried I am not getting better and worried I am never going too.  Could someone please send some comments before I drive my husband insane with questions!

[GottaSki]

Welcome Back Lola!

I certainly wish I could tell you that you will be 100% better very soon, but the truth is we all heal at different rates. Have you been completely gluten free for four months -- I know for me it took about that long to really weed out all the gluten from my life. Is your kitchen gluten-free or combined? Combined is fine -- just takes a bit more care to assure your safety.

Are there other foods besides gluten and chocolate you have tried removing from your diet?

Hang in there -- it will get better and make sure you come back anytime -- we have all been through it and make a much better sounding board than family at times.

[LolaB]

Hi Lisa - As far as I know yes, I am very strict due to paranoia I was "gluten-ed" once and it was AWFUL!!! No thanks to that happening again.  The only thing I can think of is eating chocolate, some cheese's, peppers or red meat.  I usually stick to chicken or fish.  This is very depressing.  My husband and I have a gluten free home, he can eat what he wants for lunch while he's at work, but yes our kitchen is gluten free. I wonder if I should remove caffeine, sugar?   Sometimes I wake up with a bad stomach.  Where is that light at the end of the tunnel?

[AZGirl]

LolaB, which by the way, is my mother's name. Lol! You have received so much wonderful advice. I have a complicated history with Celiac, but have returned to being gluten free around the new year. I was gluten free for over a year when I decided it would be "OK" for me to go back to gluten. Long story short, it wasn't "OK".
I have found eating a very bland diet can help my system calm down after getting glutened. I eat things like potaoes: boiled or otherwise, applesauce, rice, bananas and a lot of ginger ale. Doing this for a day or two helps me alot. Just thought this might help you, too.

I hope you find your wings soon and start feeling better about your diagnosis.