My Celiac Story - What A Long Journey

[Melissaann829]

I'm a 36 year old Irish girl with stomach problems since 2002. It began with Acid Reflux. I tried all of the prescription meds for the condition - Protonix, Nexium, Prilosec, yadda yadda. Nothing really helped. I had Acid Reflux for many years before my then-husband convinced me I should have the Nissen surgery performed (to tighten the bottom of your esophagus). The surgery was performed and I was relieved it was done and over.. I could handle a liquid diet for a few weeks while my surgical procedure healed. Suddenly, I wasn't healing and I began to experience horrible pain in the center of my stomach - as if a lighted match had been tossed into my stomach. I went to the ER and they told me I had Pancreatitis and to "Go home and eat a low fat diet for a while." I tried for a few days but I was in so much pain, I couldn't stand it. It was terrible. I went to my regular physician and when I showed her my ER lab work, she could not believe the hospital sent me home with Pancreatitis. She had me admitted and I progressively got worse for weeks. I was sent to Georgetown University Hospital for a week and had to starve my pancreas... no food or drink, fed intrevenously, etc. I went from 125 lbs to 98 lbs practically overnight. Once my amylase and lipase levels were clear, I was sent home. About two weeks later, I started having severe dizziness and insomnia. It progressed to a point that I felt like the walking dead. I went to the doctors and she had no idea what my problem was. I was sent home and it continued. No matter what I ate, I felt worse and worse. I called the doctor and asked for a Glucose Intolerance Test because I noticed I felt worse after consuming sugar. The hospital test came back that I had Hypoglycemia. I went to see a dietician who informed me of my 'new diet' rules and I followed them religiously because I wanted to feel well again! My stomach was never right again. I suffered from severe stomach bloating, constipation, cramping, gastritis. The years went on and I just accepted that "this is how life is" - be miserable and suck it up. Pain took over my stomach for another brief period and I asked for an endoscopy. My Georgetown doc suggested an endoscopic ultrasound. Diagnoisis: "Gastritis". Wow. Shocker! Sent home again. Battle continued. Then, I was called by my doc and told that my bloodwork showed I had had another pancreatitis attack and my body was already recovering from this one on its own. More Gastritis over the years. A few more endoscopies. Nothing major happening until about 3 months ago when Hell broke Loose. I started waking up to "My insides and skin feels like its on FIRE!" I was burning up inside and had no explanation for it. I told my mom what was happening and we were baffled. The burning sensation progessed and was all day, everyday. Then, my face developed a red, raised bumpy rash. I assumed I was having an allergic attack to a food perhaps and scheduled an appointment with an Allergist. My allergist told me I had Rosacea and gave me Fineaca Gel to use. He would not perform allergy testing because he said my skin was too sensitive and we would endure false positives. I went home and tried to be at peace with my newly found "skin disease"... but was my entire body suppose to feel ON FIRE constantly? I waited a few weeks, improved my diet, but the stomach pain persisted and the "Rosacea" got worse. I called my allergist again and went in for another appointment. Desperate, I explained my whole body felt on fire and I was so miserable. He told me to look for my "trigger foods", avoid them, and that the burning was from my "Rosacea". God save me, I thought. I decided to get a second opinion and went to a Dermatologist. My Dermatologist told me, "You don't have ROsacea. You have Perioral Dermatitis. Take Tetracycline for 6 weeks and you'll be good to go." I started the meds and my face improved but my stomach got worse. My eyelashes started falling out. My eyes felt inflamed and still, till this day, they continue to fall out. I was losing weight, sick, tired, desperate for answers and needed to feel normal for once with my skin. My allergist referred me back to my GI doc that I hadn't seen for years. He thought I might have had H PYLORI, thus making my "Rosacea" worse. My GI doc scheduled an endoscopy - he didn't see any issues! Just Gastritis! Imagine that! Then, I'm told I must wait 3-4 weeks for the biopsy results. A week after the endoscopy, I ended up in the ER with sharp shooting pains in my right side. Bloodwork came back fine! Just low on my Calcium levels. Pancreas levels looked good, so off I go back home. I called my GI doc and explained that I was suffering immensely and he thought I should have a CT Scan. He requested I do bloodwork before CT Scan. On the morning of my scheduled scan (after a miserable night of fasting and drinking white chalk), my GI doc called and said my kidney levels looked bad. Hmmm? Huh? My "kidneys?" But I'm the "pancreas problem girl", not kidney issues... He said for me not to do the iodine solution for the CT Scan because my Creatitine levels were elevated. Ok, on with the test. I drank two more bottels of white chalk. Test done. Doc calls me, "Everything looks fine!" ... Ok, by this time, I was seriously losing it. The nerve pain had been going on for years and no one could help me. Shooting pains in my feet and I was recovering from another bad ankle sprain from playing Soccer. The sprain was taking a really long time to heal. In the mean time, sores are occuring in my scalp. My skin was on fire. My stomach hurt terribly. A rash consumed my head, face and entire body. Things were falling apart. Another weeks goes by and FINALLY - the infamous message of "You have Celiac. A gluten-free diet should help." WOW. Knock me over with a feather?! No one in my family has this -- or do they?? Am I the only one of a huge, growing family with Celiac? I doubt that. Its been 11 days since my diagnosis and its been the longest 11 days of my life. My skin still hurts, but not as bad. The blisters still occur but not as terrible. My eyelahes are still falling out and I'm struggling to wear any lotion, make-up, or used fragrances at all. Its been a terrible journey but I am relieved to have answers finally. I hope this eye-pain goes away eventually. Its really uncomfortable. I am so thankful for this website and glad to know I am not the only person out in the world with disease. Both my grandmother and her father died of stomach cancer. Coincidence? I think not. Sincerely, Melissa

[mushroom]

Congratulations on finally reaching a destination for your journey. Yes, celiac is a genetically inherited condition, and the Irish have perhaps the highest incidence of celiac disease in the world, so chances are 100% that someone else in your family at least has it - sounds like it came from your grandmother's side of the family.

It is a shame that for so many of us the diagnostic journey is so long, but celiac is great at mimicry, and is responsible for so many other conditions that are not recognized as being celiac-related by the medical profession that unfortunately your story is not so atypical, although I wish it were so. At least now you know what you need to do to feel better. It will take you a while - don't go expecting overnight miracles of spontaneous cure. Your small intestine is damaged and will take time to heal. Be kind to it, treat it gently with fresh wholesome foods and avoid lactose (milk, cream, ice cream) for now because you will have trouble digesting them with damaged villi. You may be able to tolerate yogurt, cheese, butter - you will have to test these for reactions.

Make sure you get rid of your personal care products which contain gluten, and be very careful of cross-contamination if you are living with gluten eaters. You need your own personal cupboard, refrigerator and counter/bench space to keep yourself gluten free. Also you will need your own jars of spreads, peanut butter, jams, etc., because the communal ones will have breadcrumbs in them. You should have your own cutting board and skillet and toaster. If you barbecue put your food on foil on the grill.

You will find tips galore on here for living gluten free - read as much as you can, and good luck on your gluten free journey. Fire away with any questions you can't find answers to.

[Nadia2009]

What a story! Now that a diagnostic is settled, you can only improve your health. Just stick to your diet and if Irland is like England where gluten free food is easily accessible, you're lucky. I went there this year and I was jealous.

Do you have vitamins and minearal deficiencies? Maybe you should supplement more than before.

Welcome to the message board. I learned alot here and you will too.

[cassP]

so sorry you had such a long journey to get here-

so great you know now tho- you are on your way to feeling like a completely different person.

you might also want to ask your doc about B12 &/or D deficiencies... and maybe check your thyroid.

and know that it takes time to heal and feel better, but you'll get there

[SGWhiskers]

You have been though a really awful journey and I'm so sorry you have been through all of that. I'm glad to see that you have started on the road to recovery. It is amazing what a strict gluten free diet can do. It takes time to recover, but there will be a healthier version of you before you know it. The first few months are definately the toughest. Adjusting to new flavors, new rules, continued and confusing symptoms, and hoping to see instant results are all hard to deal with. Pretty soon, you will look back, and it will be 6 months and you will be more energetic, less painful, and exploring better food options. Make sure you take a look at the dermatitis herpiformis forum on this website. Those doctors really should have taken biopsies on endoscopy and at the dermatologists office. Most of us go too long without a diagnosis due to physician's lack of knowledge about Celiac. Also, all of your first degree relatives should have the blood tests for celiac. Do a little learning for the next month, then let them know how and why they should be tested every 3-5 years for life.

A lot of us skip the gluten free substitute baked goods for a while for 2 reasons. First, our bodies sometimes have trouble with lots of grains or minute cross contamination of the flours in the processing. Second, it is nice to forget a little about the flavors of gluten foods and then really appreciate the taste of those gluten free donuts after 3-6+ months. I seriously can't tell the difference. The bread stinks. Udi's brand is a favorite around here and although I'm allergic to other ingredients, my hubby says it tastes good.

You will want to ask your doctor to run extensive vitamin panels, the x-ray for osteoporosis, and consider blood tests for food allergens. Many of us are allergic to several foods as a result of the celiac. Get the blood test results from the celiac testing you had done, so you can compare after your 6 and 12 month retesting. Then get retested every year. You will always be celiac, but you can monitor your accidental gluten exposure from the repeat blood tests.

Some of us have developed additional autoimmune diseases. You may find that you want to explore testing for some of the others if you have symptoms (now or after the celiac symptoms have subsided).

The people here know SO much. I would have been lost without them and probably would have continued to be sick.

Many mainstream items are gluten free. Plain meat and potatoes type food is often the best when you first start the diet though. As a treat, a plain Hershey's bar is gluten free (not the mini's though). A girl's gotta have her chocolate.

OK. I'm gonna stop rambling and go to bed.

Welcome and congratulations on heading in the right direction!

[Melissaann829]

I have an interesting part to that story.. can you believe the allergist gave me "Finacea Gel" to use for my "Rosacea" -- Finacea Gel is primarily made up of Wheat, Rye, and Barley... and there I was rubbing it all over my face every day, twice a day. Anyone know what cosmetics are gluten-free and safe to use? I'd like to start wearing eyeshadow again and mascara.. oh, and lipstick! help! :-(

I'm having a biopsy done tomorrow of the Dermatitis Herpetiformis. Hopefully, I can start a relief regimen for that as early as tomorrow afternoon. What do doctors use to treat DH, I wonder?

[rdunbar]

I'm having a biopsy done tomorrow of the Dermatitis Herpetiformis. Hopefully, I can start a relief regimen for that as early as tomorrow afternoon. What do doctors use to treat DH, I wonder?

the only treatment is a gluten-free diet, Dapsone is a drug, a steroid I believe, that may relieve the discomfort, but it has it's own side effects, and is even considered to be a 'dangerous' drug. There is a Dermatitas Herpetiformis forum on this board too, you may find some useful info

also, make sure to avoid iodine, it makes DH flare up worse. It's in most multi-vitamins, sea salt, table salt and seafood especially shellfish.

I noticed a big difference after 2 days after dropping the iodized salt. Kosher salt has no iodine.

[rdunbar]

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