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New Here But, Not New To Celiac Disease


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#1 oldmann1

 
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Posted 24 August 2010 - 03:32 AM

B)
I have the following conditions, hypoglycemia chronic, celiac disease, neuropathy of my fingers, and toes.

I eat a special diet that I have come up with after reading allot of materials on Celiac Disease and dealing with Hypoglycemia. The diet is a follows:

Brown Organic Rice with husk left on straight from the fields. Ground up organic chicken breats with no hormones or other processing chemicals in them. Green Peas without salt added or other processing chemicals. Brown organic lentils, again straight from the fields. Straw Berries, black berries, and blue berries. 2 ounce of organic no hormone milk every meal. NO products containing refinded sugars at all.

Orange juice and other fruit juices spikes my blood glucose levels whether with or without sugars added.
Raw fruits like pieces of fresh apples, pares, etc.. spike my glucose too high. When that happens I get very sick and nausea imediately. I eat 6 small meals daily and all through the night. (every 4 hours)

Occording to my many doctors, I have had celiac disease most of you teenage and young life and it was left untreated for many, many years. I had glucose levels go from 55 mg/dl to 170 mg/dl (vary among these ranges.

What else could go wrong with me after all these many years of not being treated for these disorders? The diet mentioned above is the only food that sets right with my stomach at present time since, I have food allergies.
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#2 ravenwoodglass

 
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Posted 24 August 2010 - 04:01 AM

Hi and welcome to the board. How long have you been gluten free? Are you still having gluten symptoms? It sounds like you have found what works for your hypo issues. If you haven't been gluten free for very long you may find that as time go by some of your other food allergies resolve a bit. Have you tried making your own yogurt? It might be something that you will tolerate and give you a bit more variety. With the berries and some yogurt smoothies might be somewhat of a treat. If you have any questions feel free to ask. There are quite a few here with severely restricted diets who might be able to help.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 oldmann1

 
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Posted 24 August 2010 - 06:22 AM

I have other things going on with me at the very same time, also. I am a man of 57 years and, a US Military Veteran to boot. I have been diagnosed, with the following conditions in addition to the celiac disease.
Generalized Anxiety disorder, seizures, Agoraphobia with panic attacks, Enviromental Allergies and food additive allergies, Weight Loss, Tinnitus both ears, Male Erectile disorder, Hypoglycemia, possible type 1 diabetes.
Now, I am on this gluten free diet and it has helped control many of my symptoms and disorders. I was told 4 years ago about the Celiac Disease. I had the symptoms when I was a teen and young adult. Every time, I went to the doctors, I would ask what was wrong with me. They would just skake their heads and say they did not know or have a name for my symptoms. Later on however, I found it in my US Army active duty records and the VA records where they had hidden information about my conditions and withheld it from me for over 20 - 25 years. They knew but never told me.
I have been doing better the last 4 years since being on a gluten free diet than I have in the past. The difference is like comparing night aginst day.
Unfortunately, I still must battle the sugar levels every day as usual. B)
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#4 cassP

 
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Posted 24 August 2010 - 07:26 AM

OMG! i cant believe they had information in your records... but just always shook their heads... wow, you've had to come a long way figuring it out on your own- our own instincts are powerful!

you said you're still having some sugar issues??? for some people- rice can still be a problem. i read once that basmati is less glycemic than the other rices.
have u tried a protein & vegtable diet only??? it might be more stabilizing for u ??? can you handle any red meats or fish??? i think only eating poultry could limit your nutrition....

good luck :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 ravenwoodglass

 
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Posted 24 August 2010 - 08:01 AM

I have other things going on with me at the very same time, also. I am a man of 57 years and, a US Military Veteran to boot. I have been diagnosed, with the following conditions in addition to the celiac disease.
Generalized Anxiety disorder, seizures, Agoraphobia with panic attacks, Enviromental Allergies and food additive allergies, Weight Loss, Tinnitus both ears, Male Erectile disorder, Hypoglycemia, possible type 1 diabetes.
Now, I am on this gluten free diet and it has helped control many of my symptoms and disorders. I was told 4 years ago about the Celiac Disease. I had the symptoms when I was a teen and young adult. Every time, I went to the doctors, I would ask what was wrong with me. They would just skake their heads and say they did not know or have a name for my symptoms. Later on however, I found it in my US Army active duty records and the VA records where they had hidden information about my conditions and withheld it from me for over 20 - 25 years. They knew but never told me.
I have been doing better the last 4 years since being on a gluten free diet than I have in the past. The difference is like comparing night aginst day.
Unfortunately, I still must battle the sugar levels every day as usual. B)


First off thank you for your service. Our Military men and women are one of the countries most valuable assests. IMHO they should be treated better than it sounds like you were.
I am glad to hear that the diet is helping with many of the issues. As a recovering agoraphobic with PTSD myself I know how hard a road that is to walk. We can heal a lot though it is just a real hard fight.
I was also celiac since childhood but not diagnosed until my 40's as doctors can be so clueless. I eventually saw a lot of my allergies resolve and I hope the same happens for you but it can take time for the body to recover when we have been so ill for so long. Have you been able to talk to a good nutritionist? Sometimes they can be helpful. A doctor who deals with intolerances can sometimes help too. If it wasn't for my allergist realizing I was celiac I would likely be dead by now.
I hope you continue to improve.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 tarnalberry

 
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Posted 24 August 2010 - 12:35 PM

what are you getting for fat in your diet? I don't see a whole lot of protein sources, and not much at all in the way of fat. both of those are important (at every meal) to balance blood sugar levels.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 'lynrn

 
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Posted 24 August 2010 - 01:01 PM

The fat issue was sort of my suggestion. Try adding olive oil with chicken broth and what ever veggies you can tolerate to that rice and/ or lentils with chicken and maybe some kind of seasonings??? Onion/garlic if you can tolerate will go along way to adding variety to your diet.You need to get some fats back into your diet. Have you tried any fish?? Again thank you for your dedication and service to your country. You deserved far better treatment!!!
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#8 rdunbar

 
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Posted 24 August 2010 - 01:42 PM

I swear by virgin coconut oil, it's great on sweet potatoes or squash, or any veggies for hat matter
I've heard legumes like lentils can be inflammatory in general, so you might feel better if you try going without them?
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#9 rdunbar

 
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Posted 24 August 2010 - 01:46 PM

I swear by virgin coconut oil, it's great on sweet potatoes or squash, or any veggies for hat matter
I've heard legumes like lentils can be inflammatory in general, so you might feel better if you try going without them?
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#10 oldmann1

 
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Posted 24 August 2010 - 02:11 PM

I do get fat, the good fat in the diet by adding in 100% olive oil over top of my plate or bowl of food with ever meal. I just forgot to mention that. I use the olive oil imported directly from Greece. Otherwise, the olive oil you get could be made from anything under the sun. I am also allergic to nuts of all kinds and tree nuts as well with my food allergies. I found out the hard way after trying on different types of nuts following the dietition's instruction on eating. Dawn near died, wheezing, and coughing. Most dairy is off my list due to my Native American Ancestry. The only reason, I drink 2 ounces of natural chemical free milk is for the calcium factor. I used to take calcium pills but my body developed an allergy to them. The milk is skin milk. I had a problem with weight on and off all my life as an adult only. As a young teenager, I was so skinny people wondered how I was surviving what I was eating. As an adult, 5 years of over-weight followed by 3 years of extreme underweight. This time around it has lasted longer than even my doctor could have predicted. I am currently 5 feet 11 inches tall, with body weight 124 lbs. and no muscle tone. When ever, I exercise whatever pounds I loose it does not come back. The doctor told me to never exercise again. So, far my body is remaining 124 lbs and holding steady.
BMI is 17.3
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#11 oldmann1

 
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Posted 24 August 2010 - 02:17 PM

Oh yes, forgot something else too. Broccoli, Brussel Sprouts, Celery, carrots, etc... put me in the emergency room several times when I tried eating them in different ways. Yes, also food additives did too. The additives they use to prepare foods. Years ago, I tried eat meat with just a little fat left on it both red meat and pork. The gull that came up in my throat dawn near stranggled me to death. See, I am very limited in food choices.
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