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The Beginning - The Diagnosis

My daughter was "colicky" for 18 months - that is what the doc's said. By the time we turned to Eastern medicine, I was exhausted due to the lack of sleep, I was confused, as I had been told by the medical establishment, to ignore my instincts as a new mom, I was frustrated that nobody believed me and I was saddened that I could not hep my daughter. Then Robert, a mysteriously talented acupuncturist and energy healer. We went to see him from a recommendation from my sister, whose husband had been diagnosed with a undefined blood-clotting disorder by Western doc's and had been sentenced to a life with unbearable pain and daily blood thinners, who was then cured in a few months by Robert. When we walked into the office, it was peaceful with minimal furnishings. We were welcomed by Robert himself, who does not believe in secretaries. He wore slippers, walked quietly and was impressively young, considering his talent. His dark hair and quiet demeanor was new to our daughter and she hung onto Momma with a tight grip and place her cheek against the warmth and comfort of my shoulder. Robert welcomed us onto a couch and asked us to complete a health history form. Being only 18 months old, the form was quickly completed and Robert escorted us into a room, dimly light by a paper encased lamp. He reviewed the information we had provided, clarified a few dates, asked about her birth - in which she and I were induced for four days with no avail, finally delivered vaginally with an epidural and due to a slight fever, put into the NICU on antibiotics. He nodded his head knowingly, but at the same time humble - posing no threat to my heightened sense of defensiveness - as I prepared myself to hear that, like the Western doc's proclaimed, she was in good health. Robert then asked us to lay on the table, laying my daughter gently on top of me - placing our hands in unique positions as he tapped the bridge of my ankle while counting on the other hand. This diagnostic energy technique, lasted only about five minutes and was followed by a question inquiring as to what the Western doc's had said. I told them that each on of them
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did not approve of my husband and I sleeping with her and said that was her problem. Also, I conveyed their optimism that she would grow out of it. Gently, as if he was anticipating such an answer, laughed quietly and reassuringly said, "Oh, Siobhan. She is not going to grow out of this." He then went on to diagnosis her with a gluten-intolerance. His initial thinking was that if she was off of gluten, wheat and dairy that she would improve dramatically and sleep through the night within one week. Oh, what validation! I sighed heavily and tears welled in my eyes - I was so happy that this man, who I had known for less than thirty minutes, believed me and that Eastern medicine - the practice of energy - had proven that my crusade to help my daughter was justified. Although his initial belief that our daughter would be sleeping comfortably through the night within one week, did not come true, his recommendation to eliminate the gluten and wheat blessed us with a new child. The colicky, clingy, unhappy child that we had known and comforted for 18 months disappeared - a new happy child, with a beautiful smiled replaced her and my husband and I were joyous. However, few people believed us - and challenged our decision to eliminate wheat and gluten in her diet. Now however, it has been almost two months - and we have managed to remain constant in our wheat-free diet. Although we still have quite a long way to go - working with occupational therapists for sleep disorders and working our way diligently towards a six-month (no slip-ups) wheat/gluten and dairy free diet - we are so thankful that we found Robert. So, here is the beginning - the beginning of our story. One that unfortunately began with the ignorance of new parents allowing a child that did not require high doses of antibiotics - to have them administered - and thus, eliminated her natural ability to develop a healthy GI. One of eighteen months of sickness, overlooked by pediatricians. Our story though is one of hope and, although I must confess that this blog is therapeutic to a mom, I hope that our chronicles might just help another family. My goal is to blog weekly, ideally each Sunday. But, as an parent knows, idealism is hard to maintain while we are absorbed in the reality of parenting. Happy New Year! Siobhan

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1 Response:


said this on
03 Jan 2008 7:21:35 AM PDT
I'm glad you're seeing improvement in your daughter with a new diet, but if she truly has celiac, wouldn't her symptoms have started with the introduction of gluten into her diet (e.g. solid foods) rather than at birth?

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Hi Ahhhnold (is that like Shwartzenegger?! ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?

I know what you mean. On one hand, I don't want celiac disease, but on the other hand, it would be a "fixable" problem that would explain so many of my health problems... all the way back to age 11, honestly! From my understanding, from the very nice and knowledgeable people here, only one test being flagged high counts as a positive or potential positive. Letting the GI specialist know this means that they will (should) take extra care when doing and endoscopy and taking samples for biopsy. Good luck! I hope you get your answers!

A protein in corn that can be utilized by itself as a thickening agent or extracted in some cases to be used as a protein additive in highly processed foods like some process meats, gravy, sauces, etc. More often found in pet foods. Not related to wheat gluten or something the typical celiac needs to worry about. Me on the other hand am highly allergic to corn, if you have the same thing avoid it, along with modified food starch, vegetable oils, vegetable proteins, (these mixes normally contain corn) and several other processed forms along with the obvious corn starch, corn syrup, corn, masa, corn flour, maize, etc. Damnedest thing, they now often make biodegradable bags from corn starch/corn gluten, same with some new disposable ware....found out about the bags after breaking out in a rash from one I got at a health food store......

I'm 3 weeks away from my EGD and Celiac biopsy. I wish it was tomorrow. I started having stomach pain a few months back, had ultrasound, Bloodwork, H-Pylori test. Ultrasound normal, blood work normal, H-Pylori test negative, diagnosed with gastritis and given Nexium. It went away completely for about 3 weeks then came back with this constant belching, when I say constant I mean like sleeping 2 maybe 3 hours at night, the stomach pain would kinda come and go but the belching was non stop. Finally got referred to a GI specialist. While waiting on my appointment I decided to see if it could be an intolerance. First went dairy, no help. Then finally gluten. Within a week I was much better. Finally relief. I saw my doctor told him the diet was helping, he ordered an EGD and Celiac biopsy. But since I saw him a week ago I feel like I'm getting worse again. So yesterday I ate gluten free waffles and had a horrible day, so much gas and belching all day. I couldn't understand, so I looked at the box and found it's got soy. I read that people who have Celiac have trouble with soy as well. So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

Going to suggest a whole foods only diet, no process foods or dairy for now til you start healing, Many of us suffer from deficiency issues as mentioned before, common ones are Magnesium, B vitamins, Iron, Vitamin D vitamin d E, folate, the list goes on. I really do suggest starting with magnesium in the form of Doctors Best or Nature Vitality Calm, the doctors best is easier on the stomach while the calm seems to be more effective if you can deal with it (magnesium Citrate is harsh on the stomach and can cause D) I also suggest a blended supplement for b-vitamins like Liquid health Stress and Energy and the Neurological Support from the same company, 1 tbsp each 2-3 times a day works wonders for energy. You might have to look into additional supplements you might be low in and for this I suggest talking to a dietician and getting tested to see about your levels. As for pain and suffering normally you get over the withdrawal and healing starts after 2-6 weeks on a strict gluten-free diet that means no contamination or cheating. I suggest replacing most cooking appliances, cleaning everything, using freezer paper for a prep surfaces, new pans, cooking utensils, and use new liners/organizers in your drawers. Power scrub your oven and run on a cleaning cycle, same with fridge/freezer. Got to get rid of every crumb and residue there is. I suggest tossing any baking dishes with scratches, cookie sheets, roasting pans and getting new ones. Lining things with foil when cooking helps, New toasters is a must. When I started out I did so with just a toaster oven, microwave, and combo rice cooker/steamer/crock pot. Did roasted veggies, steamed dishes, stews, and got a bunch of microwave cooking ware like omelette makers, etc so I could cook safe gluten-free meals for myself. Later I slowly got new pots, pans baking supplies, utensils etc.