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Overweight Before I Was Diagnosed. Has Anyone Lost Weight Since Going Gluten Free?


jacklyn1981

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luvkin Newbie

I have been gluten free for about 7 months and have lost 35 lbs. I believe it is a combo of things; I am not hungry all the time, I am not fatigued and not feeling panic and anxiety.

I feel soo much better that I am more active and I am eating at home more often.

My life has improved 100% since I have gone gluten free; because of this I find it very easy to remain gluten free. My husband

  • 2 weeks later...

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Dedrasmom Rookie
June of 2002, I was finally diagnosed with celiac disease. I immediately went gluten-free eating only fresh veggies, lettuce with oil and cider vinegar or lemon and hamburger patty. I was afraid to put anything into my mouth and reading ingredients to discover if any had gluten was just too overwhelming. I lost about 30#, going from 220 to 190 in 4 months. I felt great. All of the digestive tract symptoms disappeared along with migraines, depression, my blood sugars were almost to the point that I was experimenting (doctor's orders) with eliminating oral diabetic med. Then something happened....I think my body started being able to absorb food correctly again and I discovered gluten-free processed food. It is now 3 years later and I weigh 230#. I have stayed gluten-free during this time and my weight has come back and I struggle daily not to gain anymore weight. I try keeping the processed foods at a minimum and eat fresh veggies and meat. I do snack on popcorn...the kind I pop myself. I count carbs as to keep my diabetis under control. Even though I am still on glipizide, it is a very low dose. I am frustrated and angry. Now that my body is working right, it seems that even a starvation diet allows me to gain weight. My doctor says that I just need to eat less and exercise more. That sounds great on paper....or coming from her point of view....but if someone can gain weight on 800 to 1200 calories a day....I understand about the exercise but I have peripheral nueropathy and very flat feet. I wear orthodics but at times, my legs hurt so bad that I can hardly walk from one end of the house to the other. I am tired of the fight...I have looked into surgery but it is not recommended for celiacs....and I don't weigh enough to be a candidate anyway. I am almost ready to just give up...eat a loaf of 7 grain bread and have diahreha and throw up until I lose some weight. I know that in all honestly, every starch I eat or fat I eat goes right to the weight gain but I guess that all the will power I have to not eat gluten does not extend to not putting Smart Balance on my popcorn or mayo in my tuna salad. I hope that you have better luck and will power than I have.

Hi Sparkles,

I'm new here. Trying to read everything I can so I will be able to help my husband who was just diagnosed in December. I didn't read too much further in this thread so someone else may already have addressed this issue with you. From your decription of your concerns about losing wt. and orthodics and aches and pains it sounds very much like you could be hypothyroid. Go to www.thyroid.about.com. and read away on their forums. Just a thought and as you will see after reading there, good luck finding a good doc. It could be with the auto immune connection. I have had numerous thyroid problems and have an excellent doc and was able to lose 40# in the last 2 years doing WW. Good luck.

Belinda in NC

Dedrasmom

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    • Kathleen JJ
      Thank you very much for the reply! As to the cheese sauce - I am not the cook at home, I'm very lucky that my husband takes on this monumental task. But how does one make a gluten-free cheese sauce? Isn't it always based on a mixture of flower and butter? I never achieved actually making it without burning it myself, but he makes it this way. Is it a question of just replacing with a different kind of flower?
    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
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