Help! I Am Overwhelmed!
Posted 18 October 2012 - 09:25 AM
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!
Posted 20 October 2012 - 05:57 PM
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!
Posted 29 October 2012 - 12:38 PM
Posted 29 October 2012 - 06:53 PM
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.
Posted 30 October 2012 - 05:56 PM
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.
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 30 October 2012 - 06:25 PM
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!
Fibromyalgia diagnosis in 2010.
Mild hyperthyroidism diagnosis 2011.
Disc Degeneration diagnosis 2012.
Life long battle with hypoglycemia.
Gluten Free since 2010. On Paleo-type diet since May 2011.
Suffered years of brain fog, back spasms, nausea, and recurring connective tissue pain and injuries. After years of misdiagnosis, I did my own elimination diet and discovered a severe reaction to wheat gluten and casein. After going on a grain free, nightshade free, Paleo-ish diet, my symptoms are nearly gone, and I FINALLY KICKED THE BRAIN FOG!
Cheers to health! <3
Posted 17 December 2012 - 11:48 AM
Posted 17 December 2012 - 12:33 PM
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.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 21 January 2013 - 10:18 AM
Posted 21 January 2013 - 10:42 AM
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.
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
10/25/13 - MCAS - symptoms plus positive Prostaglandin/N-Methylhistamine - trialing combos of H1, H2 and Mast Cell Stabilizers
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
Posted 21 January 2013 - 10:52 AM
Posted 21 January 2013 - 06:07 PM
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.
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