Hi, I am a 26 year old female from Southeastern Georgia, who has been experiencing some pretty unrelenting symptoms for three years. My doctor's have tried to pinpoint a condition that could be causing these symptoms. Looking at my laboratory testing done on December 4th, I see that my Hemoglobin, Hematocrit, Erythrocyte, Potassium, and Creatinine levels are all low, this has not been a problem up until now. Each of which seems to decrease in value each time I have labs done. I also have a B-12 deficiency, Iron Deficiency, Calcium, Vitamin D Deficiency. 4 years ago, at my second job at a plant where we produced lawn mower motors, I crushed my finger, when a motor came hurdling down the assembly line and pinned my finger, I was diagnosed with Osteopenia and told that I needed to come back and have a Dexa Scan done, to determine the extent of this problem. I was prescribed 1500 mg of Calcium and Vitamin D daily. Needless to say seven months later my current symptoms appeared and yet to ease off. In October of last year, my Rheumatologist noticed that my Iron levels were really low, in response to this he prescribed a month’s worth of Repliva 21/7, an iron supplement much like the common birth control pills, it has 21 active pills and 7 inactive. After that dosage, my Hemoglobin and Iron levels jumped up. Is it possible for these levels to become deficient again after only 14 months? Is that normal? In the last months, I have noticed an inability to keep foods of any kinds on my stomach. At first the symptoms presented with chronic diarrhea, nausea and vomiting. I was unable to even keep liquids down for the first two to two and a half weeks. The symptoms have persisted for more than a month now, so it lets me further know that it is not a virus, which was my very first thought. In association with the diarrhea, nausea and vomiting I also became dehydrated, to the point my doctor threatened to put me in the hospital and push fluids. After informing him of my fear of hospitals, he put me on Levsin Sublingually and a liquid diet. For the first few days after the script, I was still unable to keep liquids down, nor the Jello I would eat. My blood pressure also sky rocketed and has yet decreased, staying above 140/95 sometimes as high as 160/100 with a pulse of 123. I have also lost a total of 9 pounds since November 27th. I also have a persistent rash that encompasses my face, back and arms which at first I didn’t think had any correlation to my other symptoms. I am a Kindergarten educator, and seem to catch everything coming. The problems also prove very difficult for me to overcome.
My main symptoms are Migraines, elevated pulse (rarely under 110 to 115), burning pain in muscles, stiffness, swelling (worse after any infection), fatigue, malaise, depression, irritability, anxiousness, weakness, urinary retention, tingling sensations, major cramps and spasms, loss of sensation in a few areas of my body, chronic urinary tract infections, back pain, extreme fatigue in muscles and extremities, decreased memory, coordination, judgement and attention span, mouth ulcers, inability to cope with stress, hyperreflexia, abnormal babinski reflex, heaviness in trunk of my back, chronic indigestion, decreased muscular control, tachycardia, chronic maxillary sinusitis, burning pain in chest, absent reflexes in certain areas. I also have Epileptic fits, Grand Mal to be exact.
My current Dx(es) are Fibromyalgia, Hypermobility Syndrome, Myoclonus, Neuropathy, Cervical Spinal Stenosis, Early Mild Disc Degenerative Disease, Early Mild Disc Desiccation, Kyphosis, Scoliosis, Osteopenia, & a B-12/Iron Deficiency, Anemia, Intractable Migraines, Tension Headaches, Anxiety Disorder, Chronic Rhinitis, Displacement of Lumbar Intervetable Disc without Myelopathy, Neurasthenia, and Partial Epilepsy.
My current Rx(es) are Naproxen 2 -- 500 mg tablets daily, Corgard 1 – 40 mg tablet daily, Phenergan 1 – 25 mg tablet every 4 hours as needed for nausea, Compazine 1 -- 10 mg daily, Nortriptyline 3 – 25 mg tablets at night, Provigil 2 – 200 mg tablet daily, Zanaflex 8 – 4 mg tablets daily, Lasix 1 – 40 mg tablet daily, Potassium 1 – 10 meq tablet twice daily, Tranxene 1 – 3.75 mg three times daily as needed for anxiety, Zyrtec 1 – 10 mg tablet daily, Skelaxin 1 – 800 mg tablet three times daily,
Lortab (Hydrocodone /APAP) 1 (7.5 /650 mg) tablet every 4 hours as needed, Intramuscular B-12 Once Monthly, Maxalt 1 -- 10 mg tablet as needed, Medrol Dos pack -- (only used when my migraines begin coming as clusters -- has me on a maintenance dose with refills available at pharmacy), Levsin 1 to 2 tablets every four hours as needed. I have also been prescribed a TENS unit by Empi, Pool Therapy and complete Physical Therapy. I use the TENS unit religiously. It helps somewhat, not as much as I hoped.
I have 8 different doctors, all of which seem to be on different pages, and completely lost as to what could be causing all my problems. However 3 of them are very insistent that I have the above mentioned health problems, but I also have an Autoimmune Disease. Thanks to a website called Medhelp, I was messaged from several people that were originally diagnosed with Fibromyalgia and later with Celiac Disease. After researching the symptoms and my current laboratory testing, I am starting to wonder if it could be Celiac Disease.
I am in desperate need of medical advice, from someone that has more experience in Autoimmune Diseases. I live in a small town, and our medical community lack proper training and medical supplies used to make these decisions. According to my Pain Mgmt. Specialist (back in August), it is possible to acquire food allergies, and she advised me that it may be in my best interest to cut back drastically with processed foods.
I am also Lactose Intolerant, and had a positive ANA lab, followed by normal subsequent ones. My ASO titre was also high, and has not been tested again, at time of testing it was at 515 and 200 and under is normal.
Celiac Disease normally doesn't give a positive ANA, but it does have other abnormal blood-work most of the time. (Being one of the few that DIDN'T have abnormal blood-work, though, I can attest to the fact that the blood test isn't infallible.) Many of your symptoms, like the iron deficiency, migraines, GI problems, and mouth ulcers, are common with Celiac. Mouth ulcers have been debated and discounted, yet nevertheless, a significantly larger number of people with Celiac report them than in the normal population. I also used to get them, but they've disappeared since assuming a gluten-free diet.
If you suspect Celiac Disease, you have basically two courses:
Getting a biopsy is the recommended course and is considered the gold standard. Recent research has shown that this isn't 100% infallible either, however, though if both blood-work and biopsy show you don't have it, then it's almost certain that you don't.
The other option is simply to attempt the diet. This can be a significant challenge in its own right, but isn't *that* hard as long as you understand the basic concept, which is: no wheat, rye, or barley...at all...ever! Commercial oats are contaminated with wheat, so cut those out too. Gluten-free oats are often well-tolerated, but some people with Celiac will still react to them as well. It is unclear if this is a separate intolerance of some kind, or if there's some subset of Celiac patients who are reacting to more than just gluten somehow.
The trick is then recognizing "hidden" gluten, such as the more obvious things like "malt flavour" or "spelt", or the less-obvious ones like "hydrolyzed vegetable protein" or unspecified "starch". Also, different countries have different labelling standards and some places, even developed countries like the UK, can label certain items as gluten-free where other countries do not consider them to be gluten-free. Be aware as well that some of your medications may be gluten-contaminated. You'll either have to consult with your pharmacist or call the companies directly to be sure.
If you go the diet route, you should know that most doctors don't consider this definitive of Celiac Disease...they like their tests. They will either want to put you back on a gluten diet for a few months and then test you, or you'll have to do a lot of convincing over the years. (Trust me, I know. I was unable to fast for the biopsy and have since had to convince many doctors that I didn't just imagine life-long problems that happen to strongly resemble Celiac Disease and suddenly got better with a GF diet.)
If you do have Celiac Disease, once the diet is started you'll notice a significant difference anywhere between a couple of days to a few weeks later, typically, though it normally takes months or even years to become completely symptom-free.
But going back to some of your other symptoms, the one that struck me was the rash on your face. Was it shaped like a butterfly at first, by any chance? That would normally be suggestive of Lupus.
I go see my PCP Wednesday after work, I will ask him to do whatever is necessary to figure out whether it could be Celiac or not. No it wasn't shaped like a butterfly, it is almost invisible, you have to be really close. But boy does it itch, and i feel it...It drives me crazy.
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