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Newby With Many Questions...

NaomiR

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NaomiR Newbie
NaomiR
Posted

I want to begin by stating that this post will most likely be extremely long, so I want to begin by thanking everyone for reading and advising me. I also want to inform you that we have had many problems with insurance and so for the first year of my sons

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tarnalberry Community Regular
tarnalberry
Posted

An IgA deficiency is not uncommon for celiacs. I'm surprised they didn't run the tTg, and IgG's as well - they're part of a full celiac panel. Really, getting the full panel shouldn't be a problem from the doctors (though you may need to go in with some research about the best testing, and order them to request it so that they are not found negligent), but from what you describe, I can only hope you can convince them. Can you simply try him on a gluten-free diet and see how he resonds? That is fairly diagnostic in and of itself.

AmyandSabastian Explorer
AmyandSabastian
Posted
Let me start at the beginning. My third son was full term, 7lbs 13oz, normal pregnancy and delivery. He was growing, gaining weight, and meeting all of his developmental milestones right when he should. Then at six months of age, January 2003, we traveled to NC. While there we began to introduce infant cereal (oatmeal) to him. He started having problems with diarrhea. We weren't sure what to attribute this change in bowels to as he was teething and we were using filtered (Brita filter) tap water. He was breastfeed until 1 yr of age. However, at home we would substitute with an occasional formula bottle, but we always used distilled water. The diarrhea continued for 13 days. Suddenly everything changed again. He began experiencing chronic constipation and that continued for many months. The ped. recommended many short-term fixes ranging from Milk of Magnesia to dark caro syrup.

I have to talk to you. You story sounds JUST like mine. EXCEPT my son is 6 months. We caught it early and I thank god everyday for that. We are at the stage where he stop developing, laughing, smiling, sitting up etc. About the same time as we introduce oatmeal and bitter snacks. He was also breastfed and due to a lack of milk I had to put him on formula. After a month of gas, stomach and pooping probelms we switched him to Nutriemgen (hypoallergnetic foumla) and all was well again. Until we started solids. Oatmeal!!

I am crying just reading your story and what could have happened to my son. My sugesstion is to go gluten free. My doc told me to do a 10 day wash out period and call them with the changes. And of course they were drastic. In 2 weeks time he caught up on all of his milestones and surpassed the next months. it has been 4 weeks for us. And only because of my mistakes have I had any more probelms.

I wish you luck and god bless.

AmyandSabastian Explorer
AmyandSabastian
Posted

one more thing. I was wondering if you could email me. I would love to talk to you. I dont want to post my number on the forum so I would prefer to do it through emails. Hope to hear from you soon.

  • 1 month later...
NaomiR Newbie
NaomiR
Posted
  • Author

A few weeks ago I posted an extremely long post explaining my son's entire medical history. He was diagnosed failure to thrive, experienced diarrhea/chronic constipation since eating his first bite of infant cereal (oatmeal), major developmental delays...ect. His test results showed up inconclusive...due to his body not producing immunoglobulins.

Amazingly and thankfully, Amy contacted me off the board and urged me to try the diet for 2 weeks. That first weekend we made a trip to our local Whole Foods store and stocked up on waffles, Amy's frozen meals, and some pasta. We bought a supply of potatoes, rice, fruits & veggies, and some other staples from a local grocery store.

Now for the UPDATE...within four days he no longer had constipation. He is going regularly everyday! His stomach is no longer bloated/swollen. Three weeks later he is much happier and playing more. He is beginning to babble (he is 2 and not speaking). He is beginning to understand simple commands also. And, if my husband and I measured accurately, he has grown 1/2 inch.

So I must assume that he has Celiac's. I am wondering if there is an age, I think I read that children under the age of 2 test negative, when testing becomes more reliable. What is the recommended age of testing or is there not a set time?

It is a VERY hard diet to live with in regards to cross-contamination and contacting companies. I still have not dived too in depth with that area. Can someone also tell me how necessary it is for them to have their own toasters, colanders, pots/pans? Are they really that sensative?

Boojca Apprentice
Boojca
Posted

To be honest, I am not sure it's a matter of age. Well, I mean, obviously a baby that has never been introduced to gluten isn't going to test positive...but a child that is eating it should test accurately. What the issue is, is the test that was used. From what my Pediatric GI specialist told me, the usual blood tests, that can be run just about anywhere, are VERY inconclusive. Lots of false negatives and positives. The most reliable blood test right now is called a TTG test, and there are only 5 labs in the country that have the experience to run these tests accurately. I live in VT and our sons test (he is 2 1/2) was sent to the Mayo Clinic. However, for any of these tests to be accurate the person being tested must be ingesting gluten. For how long, I have no idea. It defintely sounds like Celiac, though, if your results going gluten-free are this great. My son was the same way, a complete, almost immediate turn around.

It is VERY necessary for you to have a separate toaster, and to keep it exclusive. What happens is the crumbs from the bread sticks to the "wires" in the toaster and then transfer. Some people are more sensitive than others, but until your child can tell you verbally how they feel after ingesting gluten my theory is to just do everything you can to avoid it. I bought a new toaster for $7 at Kmart that works just great. As for the colanders, I would get new ones for gluten-free simply bc those little slats or holes are tough to really get clean. And, again, until you can REALLY know how they feel when they ingest gluten and how much is too much it's better to be safe than sorry. And always remember, just bc they don't have an external reaction to, say, "one cookie" the gulten is still causing internal damage. Whether it's one cookie or one crumb. And "one crumb" quickly addes up if enough are ingested here and there.... I use the same cookware, though, for us and my son. Just be careful if yours have rivets or other things on the inside where reside could hide. Some people have also said Teflon needs to be separate as well, although I have no idea why and I haven't changed ours. I did get new wooden spoons and spatula's etc....for baking.

AmyandSabastian Explorer
AmyandSabastian
Posted

I am jumping up and down right now. I am almost in tears. I am sooooooo glad you decided to try the diet! I cant tell you how happy I am for you and never have met you. Congrats!! Super Congrats. I am so happy he is feeling better. Stick to the diet!! Who knows what will come next. Read and learn as much as you can. I am still contacting manufactors, still emailing and calling. Still researching. I havent slipped in a long time and Sabastian is as healthy as ever. He doesn't look like a potato and is reaching normal weight levels. And at 7 months he took 3 steps yesterday!!!! So, I wish you luck. If you need any help please post!!

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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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