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A Little History - My Celiac Disease Diagnosis

I've written in journals, on pieces of scratch paper, on torn-out magazine pages while sitting in airports, just about anywhere I can put pen to paper when the moment strikes and inspires me to move the ink across the page...I suppose I have much to say...not that anyone has to listen - writing and expression are like breathing for me - essentials.

I was diagnosed with Celiac Disease on April 15, 2000 - the Millennium year proved to be quite significant for my life, minus any YK2 computer crashes. My diagnosis arrived sincerely just in the nick of time, because at the ripe old age of 30 I was on my out of this life, due to almost a decade of severe sickness, complications and misdiagnosis. There are still many a day when a flash of my pre-diagnosis past enters my mind and I remember glimpses of my life during those years of confusion, sickness, despair, and ultimate frustration. I don't recall ever feeling fearful of what was happening to me though, because the funny thing about the human spirit is - we fight to live; it's innate to our souls...and of our being. However, I can honestly say that my parents and brother would not concur with my last sentence because they were laden with the fear and uncertainty of my future more than I - my job was to fight through, research,
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keep living, keep filling up my soul with whatever joys and enjoyment I could still physically and emotionally take in...and I did just that.

I was a very healthy little girl; active and athletic, loving food of all kinds and full of life. I was a serious equestrian rider and horses were my passion. One of my Basque grandfathers was a true cowboy and taught me the gift of riding at age four and I have four concussions under my belt to prove it…or wait, was it five? It’s hard to remember such things when you’ve hit your head so many times! I have such wonderful memories of riding for hours on end every summer afternoon through the golden hills of northern California. Those days shaped the way I have lived my life as an adult in so many ways and were simply so joyful and rich. It was during those years of riding, in my early teens, when I first began experiencing debilitating migraine headaches - the kind where you loose your vision and your cookies, so to speak. I remember that wearing a riding helmet in the heat was the diagnosis for the headaches that would shut me in my room for an entire day, until my sight returned. It would be 15 years later, after being diagnosed with Celiac Disease, that it became apparent the migraines were my first symptoms. Little did I know back then of the journey that ensued, leading me to a gluten free life of abundance.

As always, Celiac.com welcomes your comments (see below).


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7 Responses:

 
kimberly

said this on
13 Apr 2008 6:48:52 AM PDT
I was diagnosed with celiac disease about a week ago and I am still very much in pain. I am also 37 and after the birth of my second son I have been in chronic pelvic and back pain. It has destroyed romantic vacations with my husband and changed me as a mother. I was wondering when you started to feel better on the diet. I'm worried it doesn't work!!

 
CeliBelli

said this on
15 Apr 2008 8:51:51 PM PDT
Kimberly,

I was just diagnosed in December, and I know how you feel. Give your gut time to heal. If you stick faithfully to the diet, you should start to be pain-free within a few weeks.

 
Michelle

said this on
16 Apr 2008 10:33:17 AM PDT
I just got my official test results from Enterolab and now I know I have a gluten sensitivity and immune response to gluten and dairy. I have been gluten free for 3 weeks now and notice some improvement in my energy - but I am also taking more vitamins and have increased my thyroid meds, so not sure what accounts for my starting to feel better.

I found this explanation which may be helpful to you - apparently, it can take some time to feel better!

Gluten-induced intestinal damage is fully reversible provided gluten-free dietary treatment is strict and permanent. However, the length of time to full healing and disappearance of malabsorption depends on the severity and disease duration at onset of treatment. Hence, children and those with more mild disease at onset of treatment will resolve malabsorption quicker, usually within 6-12 months. Some adults with severe disease, or those who do not quickly grasp or employ strictness to their gluten-free diet, may have continued nutrient malabsorption for longer periods. If intestinal malabsorption persists beyond 18-24 months, dietary and clinical re-evaluation should be undertaken.

 
arlene

said this on
22 Apr 2008 9:29:34 AM PDT
I am 60 and was FINALLY diagnosed in March 2008 after a lifetime of never feeling right and culminating in severe illness in January 2008. I did my own research, which I hear is quite common and my G.I. doctor concurred. I also have an immune response to dairy, soy and eggs. My question is this: Does the immune response to dairy, soy and eggs ever stop? I am very hungry. I am eating what I can - what doesn't hurt and it takes all my time to cook and eat and I am incredibly tired already from the Celiac and now I have to cook non-stop. I used to be a vegan, but am now eating meat and love it because it IS food that doesn't hurt. I'd like to hear about symptoms other than the blanket-description I can find on most sites. I'd like to share mine too in hopes that these are common and will go away.

 
Rebecca

said this on
28 Apr 2008 10:39:40 AM PDT
I just want to encourage those who think they will never feel better. It took me at least a year to get my stomach back to normal. I NEVER thought it would get better and was very discouraged. Here are a few things I did to get there. One, drank aloe juice, cut out refined sugar (still don't eat it), cut out preservatives, and ALL bread even gluten free. It was HARD at first but SO worth it. Besides, none of that stuff is good for ya anyway. Maybe it will prevent future illnesses?

 
Kathleen Hughes

said this on
30 Apr 2008 11:22:04 AM PDT
Hi folks - I was diagnosed 24 years ago and have been eating gluten-free since then.

Once you've regained enough energy to bake, you can create some great breads, cakes, cookies, etc. utilizing one or more of the gluten-free cookbooks.

Don't forget to check medications for any gluten. The generic med are usually NOT okay as a general rule. Also lipstick and ANYTHING you may ingest.

The dairy issue does resolve itself for some folks. Soy and eggs, probably not.

 
ShayFL

said this on
11 Jun 2008 6:03:33 PM PDT
After the birth of my daughter 12 years ago: I just got sicker and sicker with migraines, neuropathy, constant gas, bloating and diarrhea.

And there was no Google back then. So I enrolled in Clayton College for a degree in Holistic Nutrition. I have a Ph.d. I tried every diet I studied and nothing helped. I even went 'wheat free' with no luck. None of my books talked about Celiac except in passing as a rare genetic disease.

I tried it all. Acupuncture. Cranio-sacral. Rolfing. All sorts of diets. All sorts of supplements. Bio-feedback. Hypnosis. Psychotherapy. Reiki. Faith Healing. I hit an all time low when I called a 24 hour prayer line and got a recording. I almost gave up on myself, god and life. Almost...but something has kept me going. I am a fighter.

My research on neurological disease with unknown etiology led me to Celiac. And here I am 2 months gluten-free. And my migraines are gone!! No more bloating, gas or diarrhea. I only go 2 or 3 times a day instead of 5 or 6. My skin looks better and my eyebrows are growing back in. This is the most hopeful I have ever been that I have found the answer. I will never knowingly eat gluten again. Never!!




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KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms--- My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP. My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"... I have a follow-up with the GI in 3 weeks. Wondering about any help?

DH wasn't linked to celiacs until 1967 from my research...

I was at a used book sale yesterday and happened to see an old dermatological textbook. Of course the first thing I looked up was dh just to see what it had to say. What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line. The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember. Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back. Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this. That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.

Feeneyja, This will be a little long but I will try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting ?The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.? And why I believe in many cases Pellagra goes undiagnosed today. Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer?s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin. All B-Vitamin's help your stress levels. IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful. Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. Posterboy by the grace of God,