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Reena added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsStuck Without DiagnosisHello all,
I have to say up-front a big thank you to all of you dedicated and sincere people from whom I have learned a lot over the past few weeks. I decided it is time to share my story and to ask what you may think about where I might go from here. Gluten was not even on my radar a few months ago, but now learning all I can about celiac disease, NCGI and a gluten-free diet has become a major focus of my life. (Trying to make a long story short, but apologize for lengh)
I am 59 years old, have been chronically constipated since an infant and as long as I can remember have suffered bloating, gas, pain, and severe abdominal distension especially after eating. As a child underwent various doctor examinations and barium x-rays, but nothing was discovered about the cause. Doctors made some dietary recommendations, gave me all sorts of nasty potions which never helped, and it just became my "normal' as far as I knew. I also suffered from chronic ear infections (always left ear), sinus infections, and sore throats. About 15 years ago I also began getting migraine headaches (left side) which always began with more severe ear pain, inflammation in head and face, and severe pain behind eyes, and had them an average of 1-3 times per week.
I was always on the lookout for what foods might trigger the migraines, and eliminating something temporarily from my diet to see if it had an effect. All to no avail until about 5 years ago when I stumbled upon corn syrup as a culprit. Since eliminating that (and also limiting consumption of corn in general) the severity of the migraines lessened somewhat, but not the frequency or the manner in which they appeared. So, there was clearly something else. I have also avoided milk products for most of my adult life, but was not convinced that it was a lactose mediated reaction (taking lactase did not seem to help the greater abdominal discomfort or headaches after dairy consumption.). I also sub-consciously limited consumption of grain products most of the time, but did not avoid them completely.
This last summer I had a long commute and it was easier to bring lunches and snacks consisting of sandwiches, crackers, and wheat containing snack foods in addition to fruits, fish, etc.. This was way more gluten than I usually consumed, and I started having strange things happen to me. I stumbled and had lots of falls, including one where I cracked a rib. I thought I was just walking too fast and slowed down. I noticed running into doorframes and bruising my arms. I am very near-sighted, so just thought my glasses needed updating. I burned myself a few times because i would be cooking and have a strange, not painful sensation on a finger, until it finally started to hurt and I realized I was touching a hot pan; or once was pouring boiling water for tea (wihout glasses on) and wondered about the strange sensation of water pouring over my finger, until it finally hurt and realized that I had been pouring the boiling water over my finger. This was disconcerting, but since I was feeling so exhausted all the time, and my head was in a fog, I had no strength to think of seeing a doctor about something that I hoped was just a passing thing. I also realized that every time I would be walking with a friend, I kept bumping into them, even though I tried so hard to walk straight. It was embarrasing. My sinuses were burning, throat was sore, experienced some urinary incontinence (leakage) and feeling like I had a UTI, although with no fever. I was nauseous often and even had bouts of diarrhea in the mornings which made me anxious on the over-an-hour bus ride. My head was constantly hurting and inflammed (was actually swollen, as determined by glasses fitting tighter and hurting face), and the migraines were more frequent. Finallly, I broke out with a carpeting of red rash from my neck to bottom of torso, and petechial rash from thighs to feet.
At this point I decided to change what I was eating, and thus cut out the bread and crackers (still not really thinking about gluten), except for 2 slices of bread on Shabbat, once a week. However, since I was also getting cramps and a creepy-crawly sensation in my legs, I thought that I was lacking calcium and started eating yogurt. The rash went away after about 2 weeks, my throat was less sore and the inflammation in head and ear not as intense. I also noticed that on Sunday or Monday (after eating bread on Friday night & Saturday) I would always get my typical migraines. Now, I started thinking gluten. So, after 4 months of once-a-week bread, I stopped all gluten (as far as I knew how to). It was amazing. No migraine for a week and the ear & sinus pain and inflammation in head were greatly lessened. I started looking up gluten sensitivities and realized that I should get tested soon, since I had been off gluten for a week (I didn't know about the effect of the 4 months of "gluten-light").
My doctor discounted what I had to say about my abdominal history because I usually had constipation instead of diarrhea. She had never heard of a link to migraines. I did not mention the neurological issues, because I did not have any idea then that they could be gluten related. To appease me she did order the blood test. It was negative:
anti-TTG+DGP (IgA+IgG) 0.61 U/ml (0 - 40)
But I did find that I was:
vitamin D deficient 22 ng/ml (up from 20 ng/ml after taking 1000 U/day Vit. D supplement for 2 years),
vitamin B-12 deficient 282 pg/ml (down from 492 pg/ml 2 years ago)
high normal fasting glucose 99 mg/dl (65 - 100)
high LDL 138 (60 - 130)
high total cholesterol 211 (120 - 200)
No other nutrients were tested for, and the high cholesterols were despite my ratios (with HDL and triglyercerides) being really almost ideal. My diet is usually very heart healthy - no oils except for olive oil, high in fruits & veggies, low in sugar, etc. Not overweight and in pretty good shape.
The doctor called and said "well, you definitely don't have Celiac". She gave me a referral to a nutritionist to consult on the high chlolesterol and a Rx for vitamin B12, and told to increase the vit D to 1500 U/day (the nutritionist said 2000 & sometimes I take 4000).
I am now gluten-free, corn-free, dairy-free for 7 weeks (no processed food except for rice cakes & brown rice cereal). Only one migraine that whole time. Almost free of inflammation in head, ear pain, sinus pain and sore throat. I am not walking into people or door frames, the feeling has come back in my fingers. Unless I have eaten something questionable I have no reflux or nausea, no panic on the long bus ride, much less intestinal gas, no pain, bloating, and distension in abdomen. I am more energetic, my steps feel lighter, and I don't get as winded when walking. Oh and I also have fuzzy new hair growth in a bald spot on my head that started about 4 years ago.
I have since learned that my adult daughter, who has always had the same abdominal issues, but no neurological ones, has been diagnosed with Celiac. Other curiosities - Always had infertility issues, with only 2 pregnancies, one was my long-awaited daughter, and, after 12 years, one which ended in miscarriage. Also, was not able to be vaccinated successfully against Hepatitis B.
So, the question... I thought I probably have NCGI because of the negative blood test, although my doctor knows nothing of that and looked at me like I was from another planet when I mentioned it. But, my nutritionist thinks that the sensitivity I apparently have to cross-contamination is more indicative of Celiac. I now realize that my very low level of gluten for the months prior to the blood test could have resulted in a negative test, even with Celiac. Can NCGI also cause the neurological symptoms I was experiencing, the nutritional deficiencies, hair loss, the infertility, etc.? Is it adviseable to just continue on a strict gluten-free diet, even though I have no diagnosis to cause the medical system to take the dietary need into account in any future circumstances? Or would it be worth risking further damage to do a gluten challenge to know which it is? I would think it would require a leave from work, since I don't think I could function if had symptoms like this summer for 8 weeks. Would you suggest genetic testing (I'm sure I would have to do it outside of the health system)?
My nutritionist will be ordering another blood test for cholesterol levels in 1 month. What other nutrients should I also ask to be tested for? (I do not live in the US and the health system has rigid guidelines, so might or might not be successful in getting them.)
Thank you so much.
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