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Frustrated In Colorado


Guest hightop girl

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Guest hightop girl

I am frustrated. I was diagnosed in July. At that time I was extremely anemic and had gained about 30 lbs, mostly water retention. Since August I got the anemia under control and lost about 25 pounds. I am training for a 1/2 ironman, and now have gained at least 5 pounds back. I really only eat fruits, veggies, and fish ( and really only a few potato chips) I somehow ate some gluten this weekend, spent the whole night getting sick, and today weigh even more. The weight gain just adds insult to injury. I do not eat any of the "gluten free" pasta or snacks... what the heck is going on?


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ravenwoodglass Mentor

For some of us celiac can impact the function of the kidneys. When glutened we will retain water. That can cause a temporary increase on the scale until our system clears out. If you wear rings the easiest way to know if that is what is going on is if they are too tight after a glutening. Make sure you are getting lots of water it will help clear things out of your system as quickly as possible.

Guest hightop girl

Thanks. That makes sense. My body reacts the same way when I have seasonal allergies. It seems to be an autoimmune response for my body. Thank you for your support.

confused Community Regular

What part of colorado are you from?

Guest hightop girl

I live in the north part of Colorado Springs. I think I am going to try to find out when the support group here meets. This is just more complicated than I thought.

roxie Contributor

Hey, It's me Roxie. You responded to my concern of gaining weight. Your kind and supportive words were extremely appreciated. It sounds like we have some things in common. I can totally relate to what you are saying. I would be so happy if I could get rid of the bloating. I'm trying so hard to be gluten free, but it's so crazy, because now I'm reading about things I may have never thought of like vitamins, medicines, and lipstick. This disease is so much work! It also sounds like you are very active. I envy you. I used to also be very active, and had started running. However, I hurt my back very badly, and I have scoliosis. My doctor said that I should stick to pilates and yoga. My physical appearance is extremely important to me, and I would give anything to be able to run or bike again. Maybe someday I will be able to resume some of those activities. Right now I am mostly trying to stick to a lot of fresh fruits and vegetables, brown rice, and chicken. But, I discovered the gluten free mall, and I have been ordering gluten free chips, cookies, and crackers like crazy (and that is probably really bad)! I also tried gluten free bread last night, but thought it was gross. I'm going to try and stay clear of breads though. Anyway, we should stick together. I know my Husband and family probably get SO TIRED of me talking about my celiac disease and my bloated stomach. It's really nice to talk with someone who shares my problems. Thanks. Roxie

Guest hightop girl

I understand about the bloating too. It does get better. Mine was really bad. I have a 23" waist normally (so I really have nothing to complain about) but when I eat something with gluten it can expand to 28-29". I have found that cutting out milk as well, diet coke, and dried fruit has helped. I also did a lot of detox baths with epsom salt, ginger and baking soda. You can find the directions on line. I do try to steer clear of the gluten free pasta, bread, etc, just because I don't really need them.

You can feel free to vent, etc. to me any time.


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roxie Contributor

I got interested when I read what you said about the detox bath. I looked it up on the internet and found the recipe. I'm going to try it. What were the main benefits that you got from it?? Did it make you feel better, and Less Bloated?? Thanks! Roxie

Guest hightop girl

I was less bloated, my joint swelling goes away, and I slept much better. Plus, I work out and beat myself up too much, and this was just something nice for my body.

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    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
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      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
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