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Woody6

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About Woody6

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  1. I feel your pain....many hugs your way. Do what is best for you and your child. Wait for the biospy, don't wait, go gluten light and wait for the biopsy....no matter what you decide it will be the right decision for you and your child. Many gave great information as to why they did what they did.
  2. I my heart of hearts I truly believe Mom's generally know what is best for their babies. Keep up the good work Momma! You want a healthy child. There is nothing wrong with that. Hugs to you and your family.
  3. Many hugs your way! I have a Type I & Celiac child (now age 8). It was his Type I that alerted us to Celiac because his Endocrinologist routinely checks for Celiac in all the diabetic patients she has. Before then we never knew Celiac even existed. His older brother was then tested and he too is a Celiac (he will be 11 in June). It finally came to light what had been ailing my son all his life and doctors kept telling me nothing was wrong and it was all in my head. It is probably the same thing that is ailing my oldest son and my grandson as well. I also found out that is what I''ve been suffering all my life as well. I know you do not have an official diagnosis at this moment but if it turns out to be Celiac there are many restaurants and chefs all over providing more and more receipes that are totally yummy...Also some slight modifications of home cooked foods you already make and eat can be made gluten free as well. It is so hard getting children to go gluten free so I understand your plight. The one thing we found recently is that the UNO (Chiacgo style pizza place) has the best gluten free pizza we have tasted to date (IMHO). We also found that Outback Steak House has the most extensive gluten free menu we have seen to date and their "Chocolate Thunder from Down Under" is totally gluten free. I'm sure there are many people here that can give you great advise and encouragement! Again, many hugs to you and your child and best wishes to you all.
  4. You have centainly come to the right place. There are so many knowledgable people on this board and it already looks like some great advice has come your way. The only question I have is did your doctor do specific blood tests for celiac and if so what were the results of those specific tests as compared to the other company? Request that information from your doctor and compare the results and see what you think. Best wishes to you on this issue.
  5. Thank you for that suggestion and I do plan on it but at the same token the information I've provided is equally correct and should be shared with the community. I have read many of the sites provided even in this specific thread and yes all doctors have the biospy as the golden standard. The problem is lack of lesions does not mean a person does not have celiac disease. It just means the disease has not progressed to the stage of lesions. Think of cancer. (may be a bad example but non the less)...cancer has four stages...it is still cancer. Look at celiac it has stages or characteristics...you can even have Celiac disease with lesions and no symptoms...which is consider asymptomatic celiac disease but you have Celiac disease. That is the basic arguement I'm throwing out there. A positive celiac panel with or without lesions in the intestines = celiac disease. Go gluten free. Get the biopsy if you wish but if you choose not to that is okay to. The doctors should not demand it. Doctors have gone on record numerous times throughout many cited sources that the reason for the lesions being the golden standard is only because of how restrictive the livestyle is to live gluten free. Do you that that is appropriate since lesions will develop eventually down the road if gluten is continued to be ingested. The top US Children's Hospital is telling the medical community there are no false postives in a celiac panel (new information surpasses and supercedes old information). If that is positive then a person has one of the three characteristics of celiac....the worst being the one with the lesions.
  6. Wonderful news you could have the biopsy today. Awesome! If it is negative going gluten free is great especially with the positive celiac panel. If the biospy is negative it just means your sweetie hasn't gotten sick enough to get to the lesions part and if you go gluten free and the symptoms she has been having disappear and she starts thriving...wonderful....she will never have to experience leisons. Word of caution, if you still have symptoms or troubles also eliminate dairy for a period of two to six months along with eliminating the gluten and then reintroduce the dairy slowly after six months. It gives the body time to heal even if there is no visible damage yet. does the bloodwork show these ranges to determine if positive or not? If not, what are the ranges on the bloodwork report? These ranges might be correct if not others can probably give you the correct ranges. Ab IgA: 19 or less - Negative 20-30 - Weak Pos. 31+ - Pos. Ab IgG: 19 or less - Negative 20-30 - Weak Pos. 31+ - Pos. TTG Ab, IgA: 7.0 or greater, positive
  7. it saddens me that you continually refuse to accept there are three levels of celiac two of which produce no lesions....but it is still celiac. absolutely amazing and yes very sad.
  8. it states if the celiac panel is positive you have one of the three celiacs...how is that hard to understand or compute? That concludes that a positive panel is not a false result but rather one of the three celiac stages....a no brainer to me and it is not off topic....it answers some questions the parent had or at least gives the parent the most up to date information so not to be misinformed. It states only the symptomatic stages produces lesions...the other two do not, hum - a no brainer to me...kind of conclusive if you take the entire lecture as a whole. and please reread all my posts where did I say that the biospy is not still the golden standard of diagnosis? Where? show me. all you are doing is circumventing the issue.
  9. we are discussing the bloodwork...celiac panel specifically. if it is negative then the doctor needs to look elsewhere but if the panel is positve then the person has one of the three characteristics or stages of celiac....that I listed. Only the symptomatic stage or acute stage (I personally call it acute) in which there will be actual lesions on the intestines that will show up on a biospy. The other two stages or characteristics of celiac will not produce the lesions on the intestines so when a biospy is done it will come out as negative for celiac and that is not true. All it means is that the person hasn't gotten sick enough to have the lesions develop but they will get the lesions over time if they continue to ingest gluten. It is just a matter of when..... The doctors still use the lesions as their golden standard of diagnosis when they should not. Their arguement is because living gluten free is a life long very restrictive diet. That is the arguement for the lesions being necessary for the golden standard of diagnosis but the community is slowly changing course to diagnosis will less evasive means which may mean they will forego the biospy as the 'golden standard'. Once a person is a celiac or has had a positive celiac panel and has been completely gluten free for a year and a new celiac panel is done then at that time the celiac panel should be negative. All that means is the person successfully removed gluten from their diet it does not mean it is a false negative or that they no longer have celiac disease.
  10. It is very sad that you continually refuse to believe the cited source I did give you. The most recent source. If the panel is positive you have one of the three characteristics of celiac....shame shame shame and shame on you for refusing to listen. It saddens me greatly. There is only ONE of the celiacs that produce the lesions you demand. That is the ACUTE celiac. My whole arguement is if the panel is positive and the source tells you it means you have one of the three celiacs then you have celiac. Just because the medical community will only officially diagnosis at the ACUTE stage of celiac is not only unethical it is down right cruel when simply eliminating gluten will correct the symptoms and prevent you from ever reaching the ACUT stage where lesions develop... so very sad that you continue to be this way....very very very sad.
  11. http://www.celiachealth.org/pdf/core_set_2005.pdf the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the general golden standard of diagnosis. Doctors are considering less evasive methods to diagnosis by considering possibly forgoing the biospy especially since that is the last stage or the acute stage of Celiac....my question is...why wait to get to that point when a positive celiac panel is enough? I was at the teaching hospital during the actual lecture and they specifically stated there is no such thing as a FALSE POSITVE in a celiac panel HOWEVER there are tons of FALSE NEGATIVES in a biospy. that part I can only tell you what was said. I cannot give you an internet cited source. That said....all three types of celiacs all have a positive celiac panel...if there is a positive celiac panel then the person has one of the three types of celiac. Only one type of celiac the symptomatic type will produce the lesions in the intestines...the other two will not. Eventually, however, a person with a positive celiac panel will produce the lesions.....eventually....that does not change the fact that they still have celiac disease without the lesions. This is the point I'm trying to stress to the celiac community. The biopsy remains the golden standard of diagnosis ONLY BECAUSE living a gluten free diet is very restrictive and lifelong. Why suffer through a biopsy when it has a tendacy for false negatives when simply going gluten free and all aliments are elivated would be enough. Just my opinion. To make a very long story short..... I have one child that had the lesions on the intestions and has the golden standard of diagnosis. I have another child that did not have the lesions on his intestions so he got a false negative. BOTH children had positive celiac panels. BOTH children have a Celiac Diagnosis Both children are gluten free and doing wonderful. Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion. Celiacs will be required to have celiac panels done annually and sometimes even biopsies if the panel is still showing it is elevated after being gluten free for a year or there was lesions in the intestions during the first biospy. The doctor will want to evaluate wether or not the intestines is healing or has healed if there were lesions in the prior year biopsy or if the celiac panel is still positive after a year of gluten free to see if lesions have since developed if there were no lesions in the last biopsy...a trip to the dietician is in order to see where those hidden glutens are that is being ingested unknowinglyl. if the celiac panel is negative a year after diagnosis and there was no lesions in the first biospy a year ago then there would be no need for another biospy that i'm aware. At least that is my current understanding regarding the annual check ups of Celiac Patients in our Children's Hospital.
  12. As I've said REPEATED...I was at a LIVE LECTURE when that statement was made....out on the diabetes forums nurses at the same lectures quote the SAME THING...but if you want to refuse to believe it that is your choice. I cannot make you believe it. waiting for a positive biopsy is senseless and darn right CRUEL....if there are THREE TYPES OF CELIACS in which I've already provided you with the CITED SOURCE....then there are THREE TYPES OF CELIACS and all of them have A POSITIVE CELIAC PANEL IN BLOOD WORK. keep asking it wont' change the truth. You are just being stubborn.
  13. So what you just did was circumvent the whole thing....a negative biospy does not mean a person does not have celiac disease. Maybe you should reread the information from the live lecture and from the link.... you are saying the bisopsy is the ONLY diagnosis of celiac....that is untrue and dangerous to keep touting as fact. Dangerous to anyone with a positive celiac panel and a negative biospy....because REMEMBER.....there are THREE CATAGORIES OF CELIAC....THREE....only ONE gives the lesions on the intestions.....THREE CATAGORIES OF CELIAC....in case you missed it...there are THREE CATAGORIES OF CELIAC...CELIAC....the only way to treat it is to go gluten free....why in heavens name would we continue to ingest gluten and continually damage our bodies just so we can finally get to the point of the lesions on the intestions...why in heavens name should we? This is why the community is changing its tone about celiac and making people aware there are three types of celiacs because it seems the medical community may lean towards less evasive procedures such as foregoing the biopsy...they haven't completely yet but they are leaning towards it. Thank heavens my children go to the number one children's hospital in the united states and they don't require the golden standard to diagnosis the children with celiac....positive Celiac Panel = positive for celiac....one of the three listed below for your reading pleasure. My doctor still does the biospy but does not use it as the sole sourse of diagnosis because she is up on the latest news in the medical field and KNOWS there are three types of celiacs and UNDERSTANDS that telling the parents the kids don't have celiac (when they do) just because they haven't developed leisons yet is basically unethical and cruel to the kids and the parents who live with the kids. Just recently a GI specialist presented a session on Celiac disease. They have reclassified celiac disease into 3 categories. Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines. Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test. Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract. The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 D). If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories. The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?) There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.
  14. The medical community is always updating its findings. I'm just sharing the most recent findings. Biopsy is still the golden standard of diagnosis....but did you even know there were three types of Celiacs? Probably not....because the only type of celiac that will produce the required lesions on the intestines is the sympotomaic celiac. The other celiacs are denied the diagnosis because they haven't gotten to the point of the lesions yets....why would we want to continually suffer UNTIL the lesions manifest itself when we can get better quicker by simply removing gluten from our diet?
  15. http://www.celiachealth.org/pdf/core_set_2005.pdf the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the golden standard of diagnosis. I was at the teaching hospital during the actual lecture and they specifically stated there is no such thing as a FALSE POSITVE in a celiac panel HOWEVER there are tons of FALSE NEGATIVES in a biospy. The biopsy remains the golden standard of diagnosis ONLY BECAUSE living a gluten free diet is very restrictive and lifelong. Why suffer through a biopsy when it has a tendacy for false negatives when simply going gluten free and all aliments are elivated would be enough. Just my opinion. To make a very long story short..... I have one child that had the lesions on the intestions and has the golden standard of diagnosis. I have another child that did not have the lesions on his intestions so he got a false negative. BOTH children had positive celiac panels. BOTH children have a Celiac Diagnosis Both children are gluten free and doing wonderful. Matter of fact they just got their annual blood work done at the children's hospital just this past Monday.