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My Recent History - Help

boysmom

By boysmom
in Coping with Celiac Disease

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boysmom Explorer
boysmom
Posted

I know this is long, and I apologize for that, but I am desperate to make these spasms stop and I'm hopeful that something here will give someone a clue to help me find out how.

About 2 months ago I went to the ER because I thought I was having a heart attack. It turned out to be esophageal spasms. They gave me an antacid cocktail, a prescription for Prilosec, and sent me on my way. I followed up with my doctor the next week and he told me to take the prilosec for 2 weeks, then if it ever happened again take it for another 2 weeks each time. The spasms didn't happen again after the meds they gave me in the ER so I figured it was just a fluke, took the 2 weeks of prilosec and thought it was over.

Two weeks after I quit taking prilosec I started having spasms again. I started taking the meds again and made another appointment with my doctor. He told me to take the prilosec for 30 days this time, and made an appointment for me to see a gastroenterologist. The spams did not stop this time, though. I was having several most days for the first 2 weeks I was on the meds. They seem to like 4am, and any time I'm in the process of waking whether in the morning or from a nap, and since they leave me pretty drained I was napping a couple of times a day. By the time I saw the doctor I'd learned a little about celiac disease/gluten intolerance and asked him to test me for that, which he agreed was worth looking at. The blood test was negative (Endomysial Antibody IgA Negative, (tTG) IgA 1 on a scale 0-3 negative, Immunoglobulin A, Qn, Serum 375mg/dL), however after he'd done the test I realized that because I'd been feeling so crummy before the appointment I'd only been eating rice, oatmeal, and bananas for a few days before, so I wasn't eating much gluten and it *may* have affected the results? I decided to try a gluten-free diet for a few days just to see if it made the spasms stop. At that point I knew I had about 6 weeks before I would be seeing the gastroenterologist and figured a few days this early would be worth a try.

Almost immediately when I started watching for gluten the spasms dropped to one every 3 or 4 days and WOW! I had energy like I haven't had in YEARS. I thought I'd found my answer. But.... every 3 or 4 days I was still having a mild spasm, which I blamed on eating or drinking things that might have had gluten sources I wasn't yet aware of. Last Thursday night I had one almost as strong as the first one that sent me to the ER, and I had another, milder one, Sunday night. I have been scrupulous since Thursday not to eat anything at all questionable... nothing with a list of chemical ingredients or not made from whole foods at home except an occasional scoop of ice cream that they claim on their website is gluten-free. I also took my last prilosec last Saturday. I thought that maybe my gut was still just healing, and the time between spasms would continue to get farther and farther apart.

Tuesday night I had another one which, although I'd rather it hadn't happened, I thought was just more of the same process. However, Wednesday afternoon I went to pick up a few things at WalMart and as I was going in I felt my gut start contracting again. This is the first time it's just hit me out of the blue while I was awake and upright. At this point I'm fighting tears of frustration. I felt like I was in early labor, crabby and my abdomen was tight all across the top and causing pressure in my throat and all through my abdomen and I felt like I was wearing a turtleneck that's a bit too tight. If I knew what to do to make it stop I'd do it, I'm just at a loss at this point and not looking forward to feeling horrible for another 2 weeks minimum. :( I did refill my prilosec and started taking it again when I got home, but it seems to make me hold water and feel sluggish, and I don't like some of the things I've read about long-term use of that either. I just feel like I'm trapped between a rock and a hard place with no idea what to do next.

A friend from another source recommended I try the specific carbohydrate diet, so I've ordered that book, but I am also concerned about whether it is nutritionally complete enough to use for such a long time (several months while your gut heals). I already know I'm anemic and suspect other deficiencies as well. My doctor also tested potassium and calcium and both showed within normal ranges, but when I have a spasm I also have other cramps later...charlie horse(s) and/or cramps in my feet as I stretch on waking. I don't want to make one situation worse while trying to correct another.

I know all this sounds like I may not actually have celiac or gluten sensitivity after all, but I also know many of you have learned a lot about other digestive issues on your journey so I was hoping maybe some of this sounded familiar and you could point me in a direction for something I should be looking at? I'd appreciate any help I can get.

Thanks,

Luanne

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Roda Rising Star
Roda
Posted

Have you had any diagnostic test to see what is going on such as an upper gi series or an egd? Even if your blood work for celiac is "normal" there can be false negatives. You could have something else going on too. If you were going to have the egd to look for other things have them do the biopsy for celiac while they are there. I hope you can get to the bottom of your symptoms and feel better.

Mrs. Smith Explorer
Mrs. Smith
Posted

Well, first of all I have these too and they took 6mos to go completely away. I still have small spasms when I eat spicy foods. I personally found that prilosec gave me D really bad! I take Tagamet if I need it and it works a lot better. I took digestive enzymes every meal and tons of probiotics (enteric coated). Most of all I never injest a single crumb of gluten. It can take a while for some of the symptoms to go away. My muscle pain took a while. It wasnt until I fixed my vitamin deficiancies, that I started to feel completely better. You have to be really dilligent and disciplined. I also noticed a great increase in energy gluten-free, so I think that is an indication in itself. The fact that the spasms got better gluten-free is also a pretty clear sign. I think to really notice a difference you have to be gluten-free for like 6mos to a year. It wouldnt hurt to give it a good try.

boysmom Explorer
boysmom
Posted
  • Author

I haven't yet. I have an appointment with a gastroenterologist on July 8th and I am hopeful that he'll be willing to do those tests and not just prescribe pills. I want to get to the bottom of what is going on, not just treat symptoms for the rest of my life.

boysmom Explorer
boysmom
Posted
  • Author

I know this probably sound bizarre, but knowing it took 6 mos for your spasms to completely stop is probably the most encouraging thing I've heard in a while lol My doctor gave me the impression that they should have stopped after 2 weeks on prilosec, and surely would after 30 days, so I thought there was something I was missing. I plan to ask the Gi to do the biopsy, as well as look for any other issues that might be causing them, so hopefully we can get some definitive answers that will pin down what I can do to stop them or prevent them.

I think I can tolerate a few more months if I'm sure it's healing and not that I'm just missing the real issue.

Thank you so much for sharing your experience!

Mrs. Smith Explorer
Mrs. Smith
Posted

If you do have a gluten intolerance, 2 weeks is not adequate time to heal! I had heart burn for a long time after going gluten-free. I still cant eat a lot of mexican or spicy foods with out having an episode. It literally feels like someone is grabbing my esophogus and squeezing it. Glutamine and slippery elm smoothies help during these times. It really does get so much better. Going gluten-free is the best thing I have ever done in my life! Good luck to you.

mn farm gal Apprentice
mn farm gal
Posted

I also get the tightening in the chest when I get contaminated by gluten. Accually last night was one time and I haven't had that in along time. What I have found out for me is that some salad dressings that are contaminated will do this for me. I also get this tightening in the chest from millet which I am allergice too, I didn't know that before but have pin pointed it and then check with a test from my naturalpathic doctor. Like you said the tightening in the chest wears you out, is very painful and makes your eyes water. Good luck to you.

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