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"official" Diagnosis

anna34

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anna34 Enthusiast
anna34
Posted

We're waiting for blood test results for ourselves and our daughter has been diagnosed with celiac disease.

What are the benefits of being "officially" diagnosed through the biopsy? I mean, if our blood results have high Ttg numbers, that means we are reacting to gluten to some degree, so the diet will help - right? Are there any advantages to being officially diagnosed with celiac disease versus assuming that you either have it or have sensitivity to gluten, and just choosing the diet?

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MsCurious Enthusiast
MsCurious
Posted

We're waiting for blood test results for ourselves and our daughter has been diagnosed with celiac disease.

What are the benefits of being "officially" diagnosed through the biopsy? I mean, if our blood results have high Ttg numbers, that means we are reacting to gluten to some degree, so the diet will help - right? Are there any advantages to being officially diagnosed with celiac disease versus assuming that you either have it or have sensitivity to gluten, and just choosing the diet?

It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten.

Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions can be related to celiac disease.

If you are diagnosed, your medical provider will be more likely to monitor and watch for things that could develop related to celiac disease. Also, I think it gives you necessary "ammo" to get schools to comply with gluten-free diet restrictions for your child, and in some countries, an official diagnosis allows for benefits to help offset added expense of gluten-free diet. Hope this helps.

ravenwoodglass Mentor
ravenwoodglass
Posted

If your blood tests are positive some doctors will diagnose based on that and response to the diet since there is a risk of false negatives with both blood and biopsy. Some people would rather not have a preexisting condition in their insurance files so they chose not to do an 'official' diagnosis. Some folks also need to have the 'official' diagnosis to encourage them to be strict with the diet but many have such severe repercussions from 'cheating' that the reaction is enough for them to be compliant. It can also be easier to get some family members to accept the diagnosis and get tested themselves if the diagnosis is 'official'. All first degree family members should be tested when one is diagnosed even if they don't have symptoms.

GFinDC Veteran
GFinDC
Posted

Some people want to participate in clinical trials for celiac treatments. Usually they want only biopsy diagnosed celiacs for the trials. Do if you want your kid to be a guenia (sp) pig then get her endoscoped.

Otherwise there is not much advantage to it that I can see. Assuming that the relates are smart enough to get tested also. The only treatment right now is the gluten free diet. And doctors don't help much with that.

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten.

Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions can be related to celiac disease.

If you are diagnosed, your medical provider will be more likely to monitor and watch for things that could develop related to celiac disease. Also, I think it gives you necessary "ammo" to get schools to comply with gluten-free diet restrictions for your child, and in some countries, an official diagnosis allows for benefits to help offset added expense of gluten-free diet. Hope this helps.

I agree with this my son was recently diagnosed and we were told because his levels were really high he most likely had celiac but the scope would confirm it. As the pediatrician suggested this is a life long thing so make sure. The fact that we needed complete comfirmation so we could claim the added expense for his food was a factor too. :)

I also have a question quite similar. My son has had the blood work, the scope but hasn't had a biopsy of his rash to confirm if it is DH, is this necessary? Doctor doesnt want to do it and he says it is echema. Would there be any point or just go with my instinct that the doctor is a quack. I've considered a differnt dermitoligist and insist it be done but really is their any point?

ravenwoodglass Mentor
ravenwoodglass
Posted

I also have a question quite similar. My son has had the blood work, the scope but hasn't had a biopsy of his rash to confirm if it is DH, is this necessary? Doctor doesnt want to do it and he says it is echema. Would there be any point or just go with my instinct that the doctor is a quack. I've considered a differnt dermitoligist and insist it be done but really is their any point?

If your son has already been diagnosed celiac then IMHO there wouldn't be any reason to have the DH confirmed. The only thing you would do for DH other than the diet would be avoid iodine until the rash is well healed. Some doctors will prescribe dapsone but I don't know that they would give that to a young child as it can be a pretty toxic med.

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

If your son has already been diagnosed celiac then IMHO there wouldn't be any reason to have the DH confirmed. The only thing you would do for DH other than the diet would be avoid iodine until the rash is well healed. Some doctors will prescribe dapsone but I don't know that they would give that to a young child as it can be a pretty toxic med.

K thanks that is what I've been doing thanks to everyones insite on here :) I didn't know if there were any other reason to have him tested for sure.

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      Help I’m cross contaminating myself,

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    • Theresa2407
      Is this celiac?

      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 
    • Wheatwacked
      Is this celiac?

      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  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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