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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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Recent Activity
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- Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Is this celiac?
The reaction one gets when they get glutened varies a lot from person to person. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
- Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Is this celiac?
A gluten ingestion can last for many months. Many years ago there was a celiac conference in Fl. Everyone there got contaminated with some having difficulty 6 months to recover. It will hit your Lympatic system and spread through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn... -
- Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Is this celiac?
Thank you so much for the responses. Every piece of information helps. I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday. I haven’t had either breath test. I did ask about additional testi... -
- Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9
Is this celiac?
Usually when I digest gluten or wheat I have a 4 hour window before reacting. If it is immediate it may be an intollerence to another food. Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a Fructose test which is measuring your Fruit Sugar? A Hydrogen Beath Test which checks your intestinal bacteria... -
- Wheatwacked replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Is this celiac?
Marsh 3b is the Gold Standard of diagnosis for Celiac Disease. Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you, you were having constant symptoms.. Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you...
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By Scott Adams · Posted
The reaction one gets when they get glutened varies a lot from person to person. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
By Theresa2407 · Posted
A gluten ingestion can last for many months. Many years ago there was a celiac conference in Fl. Everyone there got contaminated with some having difficulty 6 months to recover. It will hit your Lympatic system and spread through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough. the Pharmacuticals change vendors all the time. -
Thank you so much for the responses. Every piece of information helps. I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday. I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December. As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth. I ordered some gluten-free meal replacements to help. But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful. Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms. Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?
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By Theresa2407 · Posted
Usually when I digest gluten or wheat I have a 4 hour window before reacting. If it is immediate it may be an intollerence to another food. Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a Fructose test which is measuring your Fruit Sugar? A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State. It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) Makes good shakes with Almond milk. A hand full of almonds daily (pecans and walnuts can be substituted) brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening. No dairy of any kind (milk, cheese, yogurt, No breads, No past, No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after -
By Wheatwacked · Posted
Marsh 3b is the Gold Standard of diagnosis for Celiac Disease. Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you, you were having constant symptoms.. Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal". Gluten acts on the Opiod receptors to numb your body. Some report withdrawal symptoms on GFD. I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up. Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings. Stopped at a Wendys on the way home and the next day I was drinking again. 20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary. Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic. At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free. Well, I forgot that promise until I was 63 and my wife 10 years dead. Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back. Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency. It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus. 'Why' is poorly understood. In fact, it wasn't even known that wheat, barley and rye gluten was the cause. Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies. Especially vitamin D because it contols your immune system. Virtually all newly diagnosed Celiacs have vitamin D deficiency. There are about 30 vitamin and minerals that are absorbed in the small intestine. With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency. As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it. That is the reason foods with gluten are fortified. Gluten free processed food are not required to fortify. Vitamin D, Iodine, choline. The B vitamins, especially Thiamine (B1) run deficient quickly. We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly. Magnesium, zinc, etc. each having its own symptoms affecting multiple systems. High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12. Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study
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