Do Symptoms Get Worse Even If You Are gluten-free?

[jen3175]

Hi,

I've been gluten-free for about 4 months now and had a pretty good handle on it most of the time. I can't tolerate soy, dairy, spicy foods(tomato sauce) or peanuts anymore, so that has narrowed even my gluten-free choices down, pretty much bland food. I would always have a little pooch, but hey after losing 30 lbs. because of celiac, I wasn't complaining. I had to have heart surgery on 7/24. I'm 31 and the heart surgery was due to life threatening arrthymias. I'm technically perfectly heart health, except for the wiring Anyway, this is second surgery in 5 years, (let's hope this one works). I had to stop cardiac meds on Thursday before surgery,7/20. On Friday, I ate a "safe" lunch as usual and it hit like a ton of bricks. Pain, nasuea, literally doubled over. I had to leave work early. I've learned that when this starts the best thing to do is to not eat for at least 24 hrs. and let the episode pass. However, I had a little chicken for dinner, as I should try to keep up strength for surgery, and proceeded to throw up for the next 2 days. Called Cardiac Doc, he said to come in now, (Sun. afternoon) and gave me fluids and phinagren. Thank God!! Stayed overnite and had surgery following day. Now, my stomach has still been in upheaval after I got home from hospital. More throwing up and no food, and all that fun stuff. Had to go back to hospital on Friday, Aug.4th, to get "juiced up" again. Since Sat. evening, I've been back to square one, like I just started the gluten-free diet again. Very bland, whole foods. Rice, canned carrots, canned gb, ck breast. eggs, almond milk and tea. I'm still having nagging pain in my stomach, still burping my head off and still extremely nauseated in the mornings. What does you make of this? What did I do wrong? Can anyone else literally see their intestines ball up and move across the abs as they spasm? I'm going to a new GI on 8/16. Between heart surgery recovery and this, I need some anwsers. Can anyone help me??

Thanks -Jenny

[sarahjo]

Does your medicine have gluten in them? They say sometimes it does get worse, but i don't want to say that to you, with all your other medical problems i am a little earie that it isn't something else, how do you feel now?

[oceangirl]

Does your medicine have gluten in them? They say sometimes it does get worse, but i don't want to say that to you, with all your other medical problems i am a little earie that it isn't something else, how do you feel now?

I agree that I would be nervous to advise where you have other serious issues, but, yes, I have seen my intestines "ball up" and move around before I found out about the gluten. Do check your medications- also, I,m very leery of any canned food. The carrots? Sometimes they put other things in the water in the can. I hope you feel better soon!

lisa

[KaitiUSA]

Not only would I check your medications but I would check even products you use such as makeup and shampoo. I have never seen my intestines ball up and move as the food goes through my system and seriously that would freak me out if that happened. I do know that some people have had that before finding out about gluten and that could just be one of your symptoms but I would get that checked by a GI doctor. Have you had a blood test for celiac done recently? Blood tests are used to monitor compliance with the diet and if the levels are high still you are likely getting glutened somehow or have not cleared your body of the damage yet.

[Guest dfs]

Hello - After 5 years of [his] enormous suffering and many MD visits and tests, we have learned our 30 year old son has sensitivities to gluten, soy, casein, and corn -- which we thought was good news, finally knowing what the problem was. However, 2+ weeks into the new diet, the symptoms are worsening and he is having difficulty getting out of bed today. We are rigidly following this restricted diet and will continue to do so, but are getting alarmed that there has been no improvement, tho' much of the literature suggests it usually occurs within a couple days of the new diet. I don't wish this health nightmare on anyone, but am asking if others have had a similar experience, and how long before signs of improvement start appearing. Any and all suggestions/shared experiences would be GREATLY appreciated. Thank you. - dfs