Endoscopy and Celiac Disease

STOP! Don't let them do an unnecessary invasive test! The doctor is going to insert a long tube into your child's intestine and cut out a small piece. This is only to test the amount of damage, but the treatment is going to be the same regardless of the extent of the damage.
Celiac disease is just this and nothing more:

YOUR CHILD IS ALLERGIC TO GLUTEN!

That's it!
"People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins."
Look it up and avoid this ingredient. You will be expected by the doctors to consult with the dietician who will show you how to find products without this in them. At your child's age the body can heal so easily with the right care. The right care is no gluten period.
"Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults."
"Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder." This is because it is an allergy. Like cat allergies, or pollen, or whatever. It is just an allergy and not really a "disease" like we tend to think. "Disease" is really a term necessary for insurance to have to cover treatment. If you are allergic to cats, then you stay away from cats, right?
Some people with this problem get rashes or moody, irritable, and many different symtpoms. Since this is genetic you may also have this problem and not know it. A blood test is all that is needed to find out.
The bottom line is this,
THE ONLY TREATMENT FOR CELIAC DISEASE IS TO AVOID GLUTEN.

No matter what the damage is. If your child still does not improve then there may be gluten in small quantaties somewhere that you are not aware of. Even if the product or food is made in the same factory there could be cross-contamination. Like with peanut allergies.
If still not enough then intravenous nutrition is the only other option.
Remember your child is malnourished and has a biopsy, cutting out even a tiny piece, requires nourishment to heal.
If you still don't see improvement after these changes in diet and such, then go ahead with it, but until then save your child this terribly invasive procedure.
The best way to be sure is to feed your child whole foods that you can prepare yourself, second get a list of products that are gluten free, and third, learn to read labels.
As far as milk goes this contributes too because milk is a mucous forming food so do your homework on this too.
You can make your child better. God bless!

A great article , also, with a list of foods such as grains that are gluten free:
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Hi Adla,
Ask your doctor if the procedure for the colonoscopy is a virtual colonoscopy. These types of new tests are not as safe as the conventional ones. Personally, I do not like any kind of invasive procedures, as they can sometimes cause problems. In the case of a colonoscopy, the colon could get ruptured. I would definitely do a lot of research before I would let my toddler have this procedure done, but I cannot tell you what to do. Ultimately, the decision is yours. Do your homework. What I would do, is replenish his beneficial bacteria with probiotics, and remove all foods that have gluten in them, i.e. cereal grains, wheat, rye, barley and oats. Gluten is a protein found in these foods that can cause a "toxic immune response" in many genetically pre-disposed individuals. Gliadin is now thought to be the toxin. It is a protein sub-fraction of Gluten. You will want to look for foods that are gluten free. Look at Whole Foods Market. Has the doctor done an Anti-gliadin Antibody test? If he has and the test is positive, then you would want to change your child's diet and ask your doctor to have an additional test done - Tissue Transglutaminase Antibody Assay (tTG). Additionally, you should consider retesting for gliadin every six months. If your doctor is unfamiliar with these tests, ask him to call for more information from Immuno Laboratories at 1-800-231-9197. You can call them yourself and ask for literature to be sent directly to you regarding these tests, including food allergy testing. I recommend to my clients, a probiotic from Natren out of California. It costs less to buy directly. The number is 1-800-992-3323. Ask for Dave Ausdale and tell him that C. Turner referred you. I don't get any kind of kick back, it's just that he is very knowledgeable about all of their products and I have been dealing with him for about 10 years. I A. a wellness consultant here in SA. If you have any more questions, you may e-mail me at ____@____.com of luck to you and your little one.

Hi Adla
My name is D. and I have 2 children that have had nummerous endoscopes . although my children were older . one had his first at age 14 Total about 10 or more in all.the other her first at age 5 She has had 3 times .Our son has eosinophilic esophagitus and food allegries and our daughter has gastroparesis (delayed stomach empting)and both have acid reflux. We have a great Gi and the endos were reallly quit simple . Both were put under light sedation and were allowed to go home the same day.The best advice I can give is for you to ask your Gi doc about all your concerns. No concern is a little concern when it comes to our kids. Also check out yahoo groups there are great support groups there with a wealth of information. I will be praying for your little one and you to have peace. God bless you.If you happen to be military Doctor Noel at wilford hall Peds GI is great Been my kids doc for years .

About me
I'm a SAHM of four with 3 still at home. 3 girls ages 12, 17, 19 and a son age 22. Married 22 years to my loving Husband.

An upper endoscopy is a quick, painless procedure. My daughter had one with biopsies, as well as a flexible sigmoidoscopy, when she was 12 months old. Your child will have to be sedated, but it's a very short time. C's procedures were over before we knew it, and we have lovely color pics of her innards from top to bottom!

Her GI found intraepithelial lymphocytes, which are one of the two markers for celiac, but the follow-up blood test was negative. Intraepithelial lymphocytes can be caused by all kinds of GI tract illnesses, including simple stomach viruses.

Good luck!

I A. in San Antonio as well. YOu may want a second opinion as I can guess by the quick desire to do "surgery" on your LO.

If it's the practice I'm thinking of, we left them b/c they were too quick to do procedures.

My DD has gluten sensitivity and not Celiac-we could tell this by altering her diet and NOT putting her under an unnecessary procedure.

I emailed you as well.

Blessings~C.

Hi Adla,
I thought I would send you this story about what these parents did when confronted with all sorts of maladies including Celiac.

Blood Cell Count
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Author: Derrick B.
Title: Health turnaround with mangosteen!

When my youngest son, Ethan, was eight months old he was diagnosed with failure to thrive. He had some blood tests done and the results showed that his liver enzymes were elevated, but before any more tests could be done he was growing and gaining weight again. When he was about 10 months old he contracted RSV and had to use a nebulizer with steroid breathing treatments for about four weeks. When he was 15 months old he had a low-grade fever that spiked in the middle of the night and caused him to have a febrile seizure. He was taken to the emergency room where they gave him a breathing tube and performed many tests. The doctors discovered that his red blood cell count was extremely low and his white blood cells were virtually nonexistent. They gave him three blood transfusions that stabilized his red cell counts but his white cell count was still extremely low and falling. After a bone marrow tap they discovered he wasn’t producing any neutrophil cells, or baby white blood cells. They gave him a Neupogen injection. After a week in the hospital, he was allowed to come home. Since his bone marrow still wasn’t producing any white blood cells, Ethan had to be quarantined for several months. With a white cell count as low as his, he couldn’t be exposed to people. His immune system was so devastated that he could pick up a germ from a grocery cart that could be a death sentence for him. His hematologist started him on a Neupogen regiment. Neupogen is the miracle drug that helps build up one’s white blood cell count. We have had to give him Neupogen injections 1 to 3 times a week for the past two years. These injections run about $250 each. This would help stimulate production of the white blood cells but would barely maintain them at an acceptable level. The doctor had warned us that it might take up to three or four years for his body to recover––if it did at all.

During this time he had a high level of food allergies caused by poor absorption. This led the doctors to believe he also might have celiac disease, due to his gluten allergy. Along with all of these other problems he also had a moderate case of eczema.

I was introduced to mangosteen juice in mid October 2003. I looked all over the Internet for articles on the mangosteen. I couldn’t find a reason not to give it to him. I ordered two cases and started giving him the mangosteen juice around the first of November. Ethan had been on one ounce per day of the mangosteen juice for about three weeks when I gave him his last injection of Neupogen right around Thanksgiving. He has been on mangosteen juice for about 18 months and didn’t need another injection for the whole time. This mangosteen juice has been able to help elevate and maintain my son’s white blood cell count to an acceptable level. He has no more food allergies and his eczema is completely gone. In the beginning his doctor was totally baffled by this. Now he truly believes that mangosteen juice is doing something. At his appointment last week he still didn’t need a shot, and his hematologist said, “Keep giving him that juice!”

Here is our story about celiac disease. Although my child was too sick to do the biopsy, he has dramatically recovered with the gluten free diet. This story was sent to Le Leche League so there is a focus on what breastfeeding did to get us through but other then that it is the complete story. He is 3 now and weaned but still on a gf diet. Hope this helps.
Breastfeeding Saved My Child's Life
T. Blake
San Antonio TX USA
From NEW BEGINNINGS, Vol. 23 No. 6, November-December 2006, pp. 255-256
My son, Timothy, was born in November 2004 weighing a very healthy seven pounds, 10 ounces. He was 21 inches long. Since I had breastfed his sister, Emilie, for over a year, I knew that I would breastfeed him, too. Little did I know that breastfeeding would end up saving his life.

During the first few months of our nursing experience together, Timothy gained weight and grew. I loved to nurse him while reading books to my daughter, who was three at the time. It was so adorable when she would sit on the couch with me and "feed" her baby doll while I nursed her brother.

Timothy has always had a well-developed sense of humor. By two months, while we were rocking in the chair together with Emilie, he would quietly reach up, grab her hair, pull, and giggle! He seemed to always be smiling. He filled our home with joy.

At around seven months old we introduced him to solid foods. He wasn't sure at first, but after he caught on he decided that this was a great way to eat. He was also still nursing about eight times per day. When he was eight months old, he weighed 23 pounds. I called him my "chunky monkey." His thighs were so fat! We belonged to both LLL and a weekly support group for nursing mothers. I loved the interaction between him and the other children. I also loved hearing other women's breastfeeding experiences.

By 14 months old, Tim had not gained an ounce over 23 pounds. He was still wearing the same size clothes as when he was eight months old, and he was nursing every two hours just like a newborn. He could not sleep through the night without waking up screaming in pain. We knew something was wrong.

We saw the pediatrician often during the next few weeks. I was terrified every time a test came back normal or negative. It seemed that they tested him for everything. Then he started vomiting every time he ate. He even vomited my milk. He stopped eating solid foods. He wanted to nurse constantly. Then the diarrhea started six to eight times per day. I took him back to the doctor and insisted that they find out what was wrong. He would projectile vomit after nursing and I would cry. I was tired from waking up every two hours and I was emotionally spent from dealing with this illness for over a month.

His doctor sent him to neurosurgery to have a CAT (computerized axial tomography) scan done. She thought maybe something was wrong in his brain that was causing the illness. Just as we walked into the hospital where the test was to be done, I heard our name called over the loud speaker. I started shaking when I answered the page. The doctor said that Tim's blood sugar was extremely low. He was also dehydrated and we had to go directly to the emergency room (ER). I remember hugging him so tight as we walked to the ER. I was fighting back tears, telling myself that I had to hold it together for his sake. In the ER he vomited again. They gave him two large vials of glucose, rehydrated him, and sent us home. As soon as we got home that night he projectile vomited twice.

The next day I took him back to the ER. I was actually hoping that they would admit him. I knew in my heart that that was the only way we would find out what was wrong. They gave him glucose and rehydrated him again. I thought to myself after he was all hooked up to an IV that I did not realize how sick he looked until his color started to return when he was on the fluids. They finally decided to admit him. I was relieved. I stayed with him in the hospital and my husband stayed with our daughter at night. I insisted on cosleeping with Tim so that I could nurse him whenever he wanted. They did not want him on any kind of solid foods, but I was able to convince them that human milk was not a solid and would help heal whatever was wrong in his gut. I even brought some LLL information with me to show the doctors. I made it clear that he would be breastfed even if they did not like it. They eventually agreed to allow him to continue to breastfeed.

We were in the hospital for four days. They did every test known to man and beast. They tested blood, urine, stool, and saliva. Everything came back normal or negative. The doctors were baffled. We were so scared. By this point, Timothy had lost two pounds. On the fourth day all of his specialists got together and decided that the only thing left to try was a biopsy of his colon and intestines. The problem was that he was too sick to go under anesthesia. Tim's dad and I decided not to do it. The doctors said that we could try a gluten free diet. They suggested that he may have a malabsorbtion disease called celiac or sprue. We immediately put him on a gluten free diet.

Timothy is now 21 months old. He has grown three inches and has gained one pound since he went gluten free. He still breastfeeds one or two times per day. When he was diagnosed with celiac disease I started researching celiac and human milk. It turns out that human milk actually helps the villi in the intestines regenerate so that the milk can be absorbed even when other foods can not be absorbed. Because Timothy was breastfed, he did not die of starvation, he maintained weight for a long period of time between eight and 15 months, and was able to meet developmental milestones. He no longer wakes up every one to two hours during the night screaming in pain. His skin rashes have cleared and his hair turned blond.

I thank God that I made the choice to breastfeed my child. I also thank LLL because I learned how important it was to breastfeed for my child's health, especially when my child was sick. LLL also helped me be an activist in continuing breastfeeding while he was so sick and doctors wanted him to wean. I A. most thankful that my milk saved my child's life.