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My Story...getting Really Upset!

Bella001

By Bella001
in Coping with Celiac Disease

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Bella001 Explorer
Bella001
Posted

Hello everybody,

I know this is long, but I need advise and support right now. Any feedback would be wonderful!

Here's a short recap of what I'm dealing with. I'm 35 yrs old, 5'1 and about 90 lbs...on a good day! I've always been small, short and thin. Always had a healthy appetite and could eat whatever I wanted and never gained a pound. My family is part Italian, so pasta was in our diet several times per week. Since I can remember I've had constipation, skin, and stomach issues. In elementary school my coordination was so bad I almost failed gym class because I couldn't learn to skip. My Mom and Dad had to teach me at home. I sort of got it...enough to pass gym class!

Fast forward to 2001, I ate a turkey that was deep fried in peanut oil and broke out in hives from head to toe. Since the smell of nuts made be dry heave since a child, I never ate peanuts until that peanut oil fried food. I didn't make the connection it was the peanut oil for a couple yrs. I ate a zone bar that had peanuts in it and couldn't figure out why I could barely swallow??? Long story short, I ended up figuring I couldn't eat peanuts by putting two and two together and taking Benedryl. I also started having geographic tongue at that time.

2004-Dx w/ Stage I Melanoma. A vitamin D deficiency can cause this.

Fast forward 2005, I started having major anxiety issues. Panic type attacks. I started getting a bloated tummy, painful gas, bad taste in my mouth and I'm sure bad breath. Pain in and around my ribs, and boughts of diarrhea and constipation. I had constipation so bad and strained so much it caused me to be hospitalized for a pneumomediastinum! Spent four fun filled days in the hospital being poked and analyzed. Was asked 500 times if I had an eating disorder or if I did drugs...my inability to gain weight fueling their fire!

2006 I started loosing a little weight. Desperate to gain it back I started eating a lot of fast food...yeah I know, stupid! Lots of symptoms started at this time. I had really bad gas, painful bloating, horrible constipation, blood in my stool, stools with all different colors included grey. I started seeing an oil like ring in the toilet some days. My memory and moods were awful. I was never in a good mood and couldn't handle anything going wrong...every little thing would send me over the edge. My skin was breaking out non stop. Dark circles started under my eyes, my eyes felt dry and itchy. My hair became really dry and started to break..a lot! I had a ball of hair in the drain everyday! From time to time I would have itchy skin and a rash here and there. I got a lot more bruises than I could ever remember and had no idea why I got them. Memory got so bad I couldn't remember what I needed from the store, if it were just two things. I started getting worried I had a brain tumor. I lot more weight and went down to a low of 84 lbs in March of 2010. My Mother saw me for the first time in a yr and was shocked by my appearance. She too thought I must have an eating disorder to be so small.

May 2010...I researched everything and found I had so many symptoms of a gluten intolerance and or Celiac. After going to a doctor that told me that you have to have frequent diarrhea to have Celiac, I took matters into my own hands. I went on a gluten free diet. Within 3 days my symptoms improved! My belly went down and the gas and bloating stopped. My hair stopped falling out and my skin and moods all improved. Constipation wasn't nearly as bad and I really felt like this was it!

Last week...started having scary food allergy type problems. I almost fainted in the mall on Wednesday. I had a glass of Lactaid milk (if I drink regular milk I have really bad bloating and gas) and two gluten free cookies that morning. I started having phelm in my throat right away and felt short of breath. It got worse and worse thru the day and reached it's peak at the mall. I carry Benedryl with me because of the peanut thing, so I took one. Within 5 mins I started to feel like I could breath again...really scary! My geographic tongue popped up again also. It went away with the Benedryl as well. I called an Allergist and have an appt on Wednesday.

I'm freaking out that I may have a diary allergy now. Since all I had that morning was milk and cookies...what else could it be? I also thought maybe I also have a wheat allergy and got cc somehow. My hubby still eats gluten but he does try his best to not poison me.

I feel so limited as it is, if I add dairy to it...I don't even want to go there! I feel like I should have allergy testing done so I don't have a life threatening reaction, like the mall episode. Any help, suggestions, thoughts, prayers...bring them all!

Family history side notes...Mother has all the same symptoms I do but will not try gluten free. She has all kinds of health issues that could very well be explained by the dx of Celiac. My Grandmother died at 70 from Non Hodgekin's Lymphoma. She also had all the same issues as me, all her life. She was only 5 ft.

I've never had the skin testing done before and I'm nervous I'll have a bad reaction doing it. I'm also afraid of what the test may show. HELP!

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goodnews Apprentice
goodnews
Posted

Well it sounds like you did your research and may very well be onto something with the gluten free diet :) So glad that it helped you feel better. I have read that often celiac can cause someone to be lactose intolerant for a while until they start to heal..so maybe that is what is going on. I have also read to start with very basic things when you go gluten free. Natural things like rice, chicken, veggies, and less of the gluten free products and lactose free things. I am no expert, but that is just what I have read.

Good call on the allergy testing too. I haven't had allergy testing in over 10 years but I just scheduled my testing a few weeks ago as well and I will be going on Wednesday too! Have you gone to a GI dr? It really wouldn't be that hard to do a blood test, and then an endoscopy to check things. Of course you would have to be on gluten to get accurate results. My blood test was negative but biopsy came back with celiac signs. So now they are checking more and doing gene tests and probably another endoscopy. Anyhow, I know if you are feeling better gluten free and stick with it it doesn't matter much....but if you have family that may need to be tested a positive diagnosis from you may make them actually get tested themselves! Of course you never know if they would follow through because to some ignorance is bliss. I too think my mom has lots of symptoms, and unfortunately my 3yo daughter as well. I am 33 and my mom had colon cancer at 35. Thankfully she is fine now and is now 60. We have an extensive history of colon cancer and intestinal cancers in our family, and also lots of osteoporosis and arthritis that hits early. So it's worth checking into.

Anyhow, good luck! Hope you get some more answers soon!

Diane-in-FL Explorer
Diane-in-FL
Posted

It would be a good idea to get your Vitamin B12 and Vitamin D checked too. Deficiencies in those can cause some of the things you describe. Good luck.

butterfl8 Rookie
butterfl8
Posted

When you get the allergy testing done, they are prepared for any adverse reactions. So don't worry about anything bad happening while you are there! They will take care of you. Best of luck!

Try to keep a food diary, track what you eat, and what symptoms you have afterwards. This may be the best bet--allergy testing for foods won't always show all of your food intolerances. It sounds like yours will show up, but there may be some that might not show up. Keep going the way you are.

-Daisy

cyberprof Enthusiast
cyberprof
Posted

Bella, sorry you are having challenges. It should get easier.

If you are still in the early stages of going gluten-free, I would advise against eating things like gluten-free cookies or baked goods. Couple of reasons for this. The cookies could have something in them that you react to, could be cross-contaminated ("CC") with nuts. Some just don't work in a person's messed-up digestive system until it heals.

Start with plain rice, plain chicken, turkey, fish, beef; cooked veggies (zuchini, spinach, carrots, sweet potatoes, white or new potatoes etc), applesauce, canned pears and peaches. I found that cooked fruits/veggies were better than raw. Avoid milk, cheese, eggs until after your testing and may need to avoid milk for 6-9 months til you heal.

Don't eat the gluten-free bread products until you have all the other things figured out. If you need a treat, try Dove chocolate squares, fruit sorbet.

Good luck with the testing.

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