Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

mommida

Advanced Members
  • Content count

    3,080
  • Joined

  • Last visited

Community Reputation

155 Excellent

About mommida

  • Rank
    Advanced Community Member

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Recent Profile Visitors

23,793 profile views
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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!
  8. 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.
  9. If you think there is still some underlaying issue, go back to the doctor for further testing.
  10. Culvers, Is it really gluten free?

    We have eaten Culver's 3 times now. It has been a good experience. There is no ketchup, mustard, or mayo put on to save you from cross-contamination. You should have received single serve packets. From what I observed, the buns are placed on a warming rack. I had one bun out of 4 that the bag was open. I examined the bun and the area where to hole was and the bun was not even dried out in that area. So I think the bag broke open to vent while it was on the warmer. I think the right thing to do is tell the business (any business) what went wrong (as nice and professional as you can be). The business then can fix the problem. The business is open to make $$$, they have to know how to make customers happy to stay open. We need to have places to eat when we are traveling, and this shouldn't have to be over complicated to work into a fast food system.
  11. Sorry to hear you are going through all of this. ((HUGS)) cyber hugs to you Continue to eat gluten through out your testing. To really find answers you will probably need to have an endoscopy with biopsy. Have a full discussion with your doctor to understand what medical issues can be ruled out or diagnosed with the biopsies. (also make sure the pathology tests for everything possible are being tested. i.e. eosinophils with red dye - no doctor ordered screening = no red dye= no eosinophil count) In the time being... Keep a food journal. Diet, symptoms, and activities compared to a time log. In the case of Eosinophilic Gastrointestinal disorders; active damage happens for up to 12 days after a "trigger" has activated eosinophils that may be airborne. Good luck with testing and feel better soon!
  12. At this point, you can get a baseline of where Celiac damage is at. (It seems you feel strongly that it is Celiac) An endoscopy can rule out any other diseases/issues that you may also have. A big problem in diagnoses for gut issues, they can present the same symptoms.
  13. Advice please

    If it's possible, switch doctors. You need a doctor who works with you, and that includes listening to what you say. If you ever get a possibly fatal infection that is time critical, you need a doctor to diagnose you as quickly as possible. (It happened to me. The doctor's office was laughing so many people had shown up thinking they had meningitis because news coverage of recent deaths in the area. Problem was I was showing symptoms and had contact with a family member of one of the deceased. Headache was so severe I could barely talk and doctor didn't even ask me any questions. Gave me migraine drugs and an antibiotic. Hours later I was having seizures and was hospitalized. It really didn't mater that 20 people before me were just panicked, I really had the illness.) You should have been tested for Celiac before you made any changes to your diet. Now that you are noticing a difference it will be harder to eat gluten for the testing. If you don't have enough damage from gluten- you can't get a Celiac diagnoses.
  14. Help!

    I've heard of cases where Lyme triggered gluten sensitivity. Lyme could have "triggered" Celiac. A lot of your symptoms are connected to vitamin B 12 deficiency. Vitamin B12 is water soluble and is not linked to a toxic level danger. If you take too much you would most likely get "D". Are you going to get further testing at your doctor's office?