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Very Confused


Nancy Lake

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Nancy Lake Rookie

I think I need a doctor or a group in Phoenix.

Last week was hard. I am gluten free now for about 2 weeks. At first I was peeing a great deal. I guess I had been retaining water.

Lately I am just tired and my stomache rumbles alot. I still eat sugar. I still drink coffee.

I recently quite smoking too. So I have had a very rough week. Inspite of all the water weight I am loosing...don't think I am much thinner.

I have a huge weight problem. I probably need to loose about 60 pounds. Some people say, then your not Celaic...or you would be quite thin.

Maybe I am just detoxing...the tiredness and water loss. There is no pain..just tired. Have not been to the gym like usual.

I also take apple cider vinegar. Enzymes. Minerals, Vitamins...etc. Just don't know what to expect next.

I thought after two weeks I would get some energy back.

How long does it take the intestines to get healed. My liver feels enlarged or swollen too. Is that also part of the cleansing process?

More and More questions.

The last few months I was craving bread all the time. Is that typical of a Celiac not yet gluten free?

Oh, I know I need to part with more things. I don't eat a lot of sugar..but a little. Over all I am doing good except for coffee.

Will coffee keep me from healing? I am quitting so many things...

Thanks, Nancy


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Aleshia Contributor

gluten causes your body to have withdrawal symptoms when you go off of it. maybe that is some of what you are experiencing?

ShayFL Enthusiast

It takes time. And forget what the doctors say. I was told I was too thin to be hypothyroid. And I am and now properly medicated.

mftnchn Explorer

My encouragement is to hang in there, it actually takes 1-2 years to heal. Overweight is also a symptom of celiac, your body is in starvation mode because you are not absorbing what you need, so you store fat. Also inflammation causes water retention.

Be sure you are fully gluten free, and also check your personal care products. Be sure you have stopped using pans and kitchen items that cannot be adequately cleaned from gluten.

In addition, may celiacs are sensitive to milk either temporarily due to intestinal villi damage or long term. Try eliminating milk for awhile.

Also a subset of us are sensitive to soy as well which has also been shown to cause villi damage in some people.

Take it a step at a time and keep posting here so we can help and encourage you. Read and search this forum for your questions there is a huge amount of great information.

TipTip Newbie

Hi there!

I am in the Phoenix area too... aren't you loving this heat? :)

I know I felt like crap for a couple months after going gluten free. I am now about four months out and I am feeling better - which is kind of funny because I did not feel bad before.

Give yourself time, this is not the easiest transition - or at least it was not for me. I am also an overweight Celiac and according to the BMI scales and everything at the doctor's office also have about 60 pounds to lose - but I take one thing at a time now, so for now I just focus on the gluten and pay attention to the fat - but I do not worry about it too much.

Although I really did feel better by leaps and bounds when I took out sugar and replaced it with anti-inflammatory foods.

Best to you, hang in there - this is a process, a slow process, but a process that does get easier over time... I swear.

tom Contributor

I also suggest being dairy-free & soy-free for at least a while then testing each.

Reducing or eliminating processed foods can be VERY helpful as well.

I lived in Phx (Ahwatukee) '05-'07 and subscribed to yahoo's PhxCeliac group.

Open Original Shared Link

Also there's Open Original Shared Link

& Open Original Shared Link

And I went to some monthly gluten-free meetings at the Tempe Whole Foods. Uhhhh :huh: 2nd Thursday of each month maybe?

I think other Phx area WhFds have them but can't recall which.

Some gluten-free restaurants besides chains:

Open Original Shared Link

Open Original Shared Link

Oops, thought I had another .. ..

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      Wow, that's alot of info, Thanks!!!! I had my intake with Nutrionist where we went over basics and then will have follow up where we will talk about all the questions I've come up with (including the fiber question and so many more). I'll talk to her about the info you provided as well.  Thanks again (newbie here 😀)
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      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
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    • Trish G
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