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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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    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
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