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boysmom

Esophageal Spasms

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Recently I ended up in the ER with what I thought was a heart attack. It was some pretty strong esophageal spasms, which had been misdiagnosed years earlier (and milder) as panic attacks. After the 'antacid cocktail' the ER gave me they didn't bother me for the 2 weeks I was on Prilosec or the next 2 weeks, then they started again. Because I don't want to have to take Prilosec every 2 weeks for the rest of my life I was doing some online research on my own to try to figure out what was causing them. I really have a pretty stress-free life.

Then I saw an interview with Elizabeth Hasselbeck about her new book. Several of the things she mentioned that people were diagnosed with before they get a celiac diagnosis were things I've dealt with over the years: anemia, joint pain, chronic fatigue, miscarriage/infertility, diabetes (I had gestational diabetes with my last and possibly last 2 babies) and autoimmune diseases such as fibromyalgia (my mom has) and Hashimoto's thyroiditis (which was mentioned as a possibility when my hypothyroidism was diagnosed). I figured it was worth looking into and added it to my online research. WOW... so much of what I found resonated with what I've been writing off as getting older or being out of shape. I've also had a recurring rash that sounds to me like it could be dermatitis herpetiformis. If what is going on with me IS actually celiac or gluten sensitivity, I might actually be able to feel something close to normal again??

When I saw my doctor for a follow up after the spasms returned I brought up the subject with him. I don't want to sound like I'm jumping on the bandwagon of every celebrity diet, and I'm NOT thin at all, I need to lose about 75lbs, BUT he and I have discussed before that it seems like my body is in starvation/conservation mode because I eat good quality foods, lots of whole grains and homecooked food not the SAD, and typically eat between 1400-1600 calories a day. He said he'd do the celiac panel (haven't followed up now that I know more to know just exactly what he tested) and make me an appointment with a gastroenterologist (July 8).

The blood test was negative, but I do know that because I was feeling so bad (the spasms were coming several times a day at that point, and leaving me bloated, exhausted, and sore from my throat to my stomach, across my diaphragm, etc) I really wasn't eating much and was eating things like oatmeal, scrambled eggs, and rice for several days before the test. Yep, I was accidentally treating myself with 'gluten-light'.

Once he'd done the blood test, and I knew I had several weeks before there would be a chance of a biopsy, I decided to try to eat gluten-free for a few days and see how I feel. Not only am *I* amazed, but even my family and friends can see a difference in my energy and alertness level. Now I face a dilemma... I simply do not think I can tolerate 6 weeks, or more by the time they get a scope scheduled, of living with multiple spasms a day. I am a LOT more concerned with feeling well than with an official diagnosis, but is there a reason I'm not aware of that would make it worth the suffering? I mean, I know the spasms aren't fatal, but I have 5 children still at home and I do not have time to lay on the couch all day every day for weeks on end. These things knock me on my butt!

My biggest challenge so far is managing to stay gluten-free for more than 3-4 days at a time :( The boys are busy and active in various activities which keep putting us away from home at mealtime and just when I think I have it figured out I find out I didn't read the package clearly enough. Because of that, every few days I have another round of attacks. The latest was when I had a glass of sangria the other night. Wine is safe, and sangria is just wine and fruit juice, so it should be too, right? Well not this brand, it was wine and 'natural citrus flavors'. Even if I'd read it before I drank it I don't know that I'd have expected to have a problem with that one, but I'm learning. I'm seriously tempted to call my doctor back and ask him to set me up with a nutritionist who understands gluten sensitivity so maybe I can avoid some of these issues.

So now that you know my life history ;) any advice or suggestions?

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I suggest you go through the testing. Not only does my daughter have Celiac, but she was just diagnosed with Eosinophilic Esophagitis.

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Thanks mommida. I just looked that up (never heard of it before) and it does sound like a real possibility. I fully expect the Gi to order an ENG and possibly even want to look through my entire bowel, so hopefully something like that would be picked up then. If I'm not eating gluten (and if that is the allergen causing EE), how long would it take for the eosinophils to clear out? Would they flood in again if I have to, if I eat some gluten the day or two before the test? I could probably tolerate a few days of misery, but just can't deal with weeks or months and the wheels of medicine seem to turn as slowly as those of justice lol

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I'm new to the EE world. Gluten may be your trigger for EE. You can have Celiac and EE, hopefully we will have information on a possible connection. My daughter's triggers are casein, eggs, peanuts, chick peas, and she has been gluten free since she was 17 months old. We have to try fish, shellfish, and tree nuts still. She is able to tolerate soy.

She complains of the pain by the next day if she has ingested any of the known trigger foods.

Make sure you are dealing with a specialist for any and all of these tests. "Normal" looking tissue needs to be biopsied, and that is why some diagnoses are missed.

Would it be possible to move up your testing? I hate to even suggest a person keep ingesting anything that might be harming them. You can do a genetic test for Celiac. Some insurance plans will not cover the test, some GI's will only list you as a "possible" Celiac with a positive gene(s), the test is not really 98% accurate ~ human lab error, improper handling/reading, you can be the known 2% error rate, and not all Celiac genes are identified.

My thoughts and prayers are with you. Keep posting here, it's great group and there is a lot of information to be shared.

L.

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Why don't you talk to your dr again and express to him your very real fears? You can report the amazing way gluten-free makes you feel. See if he can't pressure the GI to give you a priority status. At the very least you can call the GI office and ask that they put you in for any cancellations. Tell them you are willing to go at any time. If you're off gluten, it's a very good chance for a negative result.

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