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mommida last won the day on January 15 2016

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  1. mommida

    New Issue No Explanation

    Perhaps you might want to look into Eosinophilic Esophagitis. Those food globs that are from previous meals might have been stuck in your esophagus. Trying to lie down causes painful GERD like feeling , but definately small "burp" vomitting is a symptom.
  2. I was totally bored tonight and decided to stop by. I went through my Daughter's Celiac diagnoses at 16 months old and her Eosinophilic Esophagitis (EOE) when she was 6 years old. She is now 15. My advice... Get to a gastro. doc. ASAP Discuss what an endoscopy will be ruling out/diagnosing. As EOE is suspect, the "trigger" may be an airborne allergen - which depends on the season during your testing if it can be diagnosed. Make sure the doctor doing the scope is specifically testing for EOE as the lab samples must be screened for with red dye. Adults are diagnosed by a higher count range than pediatric patients. Difficulty swallowing in EOE patients is caused by narrowing of the esophagus, schatzi rings, grooves and furrows. You are at a significant risk of actually getting food stuck in your throat because of this damage. So no diet changes at this point and get to the doctor ASAP. You can soothe your throat and boost some extra (empty) calories with Slurpees/icees from 7 11 or other convenience stores. There are many Celiac patients that also have EOE or EOE patients that have determined gluten to be a "trigger" allergen here at the forum. (You can find decades of experience to draw from to help you if you do have EOE or other "common" Celiac issues.
  3. Have you seen pictures of undernourished alcoholics (beer belly), starving children, end stage chronic illness? All have large protruding bellies. The body does try and hold on to all nutrients and tries to protect vital internal organs in the trunk of the body. It is a misleading visual for starvation, inflammation, constipation in a person who can be retaining fluids. All of that can make a person look pretty puffy. I think every Celiac should also be having their thyroid monitored for auto immune thyroid disease too. Graves disease is an over active thyroid and Hashimoto's Thyroiditis can start out flip-flopping between over active to underactive until it finally destroys the thyroid function entirely -lifetime of thyroid medication is needed. Hashimoto's likes to hide itself by making the neck area very puffy and swollen.
  4. You were on a gluten free diet for the blood draw - so it is useless. If you are doing a good thorough job eating gluten free it should be negative. Your positive gut damage is proof of Celiac. It has been said Celiacs need about 2 years to heal the gut. I did hear of a case of medication (for a mental disease) caused Celiac like gut damage in a child. The parents were not really open about discussing the behavior/mental condition of their child or the medication. I think you have enough proof to justify needing to be gluten free. You can spend more money for genetic testing that may not as accurate as what you have been told as any blood test has a 30% human error rate.
  5. Could be symptoms of gallbladder issues. What tests were done to rule out gallbladder issues? I had my gallbladder taken out a few years back and felt so much better after. I tell you don't fear having a surgery that is going to make you feel so much better. (If it is your gallbladder.)
  6. mommida

    Someone trying to help

    Could it be like a spouse/life partner saying, "We are pregnant."? As a concept you are a united team. Less chance of cross-contamination by meaning gluten is not allowed at this table.
  7. I'm glad you have answers for the pain and know have the information to get and stay healthy! Let's try and stay positive here. (If you knew about the current implosion of troubles that have crushed my spirit this week and left me cussing and swearing and praying you would be shocked I could even say this to you or anyone right now.) You are allowed a little pity party, but your going to have to pull up you big girl/ or boy pants and get on with it. Back when my daughter was desperately ill and just diagnosed with Eosinophilic Esophagitis on top of having been gluten free for 5 years, she had to go on an even stricter elimination diet. No top 8 allergens (wheat was already gone) and no peas. That even took out a lot of gluten free products- pea starch. She was given amino acid formulas to try and keep some of her nutrient levels. That stuff was so nasty. The alternative for not following the diet or not finding the triggers for the damage occurring to her esophagus? A food pump/ feeding tube. She wouldn't be able to eat food at all. Just dumping a formula of nutrients into a port that was put into a location on her body. It took some time, I found recipes to adapt with allergen free ingredients. I researched. We tried things. Not only did it work out fine, but some of the "new" foods were better than what we were eating before. Cyber ((HUGS)) for you.
  8. Many things could have changed in 1.5 years for the tests. I think you are on the right track going gluten free as I have found numerous reports gluten free helps for auto-immune illnesses. You have been feeling better, and a gluten challenge could make you very ill. I would what for an accidental gluten exposure to see how you feel for further proof.
  9. Go back to the doctor's, there is a chance you missed something else. Don't make any diet changes, as diet may determine other food intolerances or immune reactions. Sorry about the constipation. We have dealt with that. Or best advice~ figs. A high dose of magnesium and high fiber with iron too. (anemia can cause constipation) All those little seeds act as colon scrubber.
  10. I don't put full trust in the genetic testing. There may be a language barrier to how you are explaining Celiac. It is an auto immune disease~ the body's immune system attacks and destroys normal healthy tissue of the small intestine. If I remember right the starving children of Belgium during World War 2 helped find the gluten free diet treatment of Celiac. (During the 20's "banana babies" or children found to be suffering from malnourishment/wasting no matter how much they ate of normal diet.) Well the children that suffered from this severe malnourishment did better during the famine. When the normal diet was then introduced, the children became sick again. It was the biggest clue that the diet was the root cause of the illness. If you are Belgian or northern European descent you have very good odd of being genetically predisposed to Celiac and pregnancy or stressor to your immune system acts like a "trigger" to activate an auto-immune disease.
  11. Genetic testing is not as accurate as whatever percentage you were told. My daughter tested positive for both DQ2 and DQ8. My genetic test taken through a different doctor's office was negative. As the lab tech seemed so flustered about the blood draw and the inconvenience to day. I had contacted Prometheus labs to question the results.. Like did my daughter's results and my results even show that we are biological mother and daughter? Never got an answer to that, because I requested the test be done over. I was promptly told that I must have been in the 2 percent of none miss results, genes mutate, and that EVERY blood test has at least 30 percent human error rate. Not all Celiac genes are identified. (if I had an official gold standard diagnoses they would have put my daughter and I into a further study to look for unidentified gene or gene mutation. Like the other poster pointed out. You lab test showed positive antibodies and the gluten free diet had an improvement to your health. I would listen to your body as the true diagnostic tool.
  12. You are right to be concerned with the low growth rate. There are any number of illnesses/disease that can start from these symptoms. food sensitivities, parasite infection, H. Ployri., congenital defect, hernia, Celiac, eosinophilic gastrointestinal disorders, and the short list of usual suspects. You also have to consider the gut may really be out of whack due to the antibiotic use from the ear infections which can cause some temporary food intolerances. So tell the ped at your appointment and get a referral to specialist for further testing. Your ped appointment should include an iron level test, but you should be able to start a stool test kit for parasites and blood test to check for vitamin and nutrient deficiencies. If you are hoping to get the Celiac panel drwn I would make sure you have that information on hand to make sure the complete Celiac panel is drawn. Your child's pediatrician should be professional enough to listen to you as the parent. Your child is unable to communicate all symptoms verbally and may not even complain about what is "everyday normal" . As for further testing... an endoscopy with biopsy will probably be ordered to further diagnose or rule out illness/disease. Do NOT make any diet changes until testing is complete. Good luck with testing. Daughter diagnosed with probable Celiac at 16 months old. (symptoms since months old and terrible time starting cereal at 7 months) Daughter diagnosed with Eosinophilic Esophagitis at 6 years old.
  13. You have to eat gluten during the testing. Anxiety is a symptom, most likely from vitamin B 12 deficiency. Changing your diet seems overwhelming at first. There are so many products on the market now and the general population has more knowledge. You need to have a positive attitude of "what you can eat"; don't concentrate on can't. Good luck with testing, and feel better soon!
  14. To go for a Celiac diagnoses she has to eat gluten. If she is still having problems, like a gluten reaction when she hasn't had gluten that you are aware of- get the endoscopy. She may have another disease/ disorder that may have a connection to Celiac. H. Ployri., congenital defect, hernia, parasitic infection, and Eosinophilic Esophagitus all have similar symptoms in pediatric patients. My daughter was diagnosed with "probable" Celiac with some positives on the Celiac panel and positive for 2 Celiac genes when she was about 17 months old without the endoscopy. (She was too ill to have the endoscopy after eating gluten for 2 weeks for the blood panel. She was hospitalized for dehydration,) Things went so much better on a gluten free diet for years, but she would just get a lot sicker than most kids. Her symptoms seemed like she had ingested gluten, but got much worse. When she was 6 (right after Halloween) she just started vomiting on a daily basis like severe GERD acid reflux. She went in for a endoscopy and was diagnosed with Eosinophilic Esophagitus. Stupid, stupid, stupid ped gastro Undiagnosed the Celiac diagnoses at that time because there was no damage in her intestine -she had not eaten gluten for 5 years! So you better have a great doctor to work with and know what results to expect from current diet.