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Will My Body Ever Realize That I'm Not Starving Anymore?

gfjayhawk

By gfjayhawk
in Related Issues & Disorders

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gfjayhawk Rookie
gfjayhawk
Posted

I had severe malabsorption issues for many years before diagnosis. Despite having the celiac belly, I was still quite thin. Since I have gone gluten-free (about 10 months ago) I've gained quite a bit of weight. I'm not eating more, but my body seems to be wringing the most out of every single calorie. Has anyone else had this issue, and did your body ever settle down?

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

I have three thoughts...

1. What is your current BMI? Aside from the issue of malabsorption, were you underweight before you stopped eating gluten?

2. What is your diet like? Are you eating lots of fruits and vegetables, proteins, and healthy fats? Avoiding heavily processed foods? Not all gluten-free foods are healthy or good for the waistline.

3. Have you ever had your thyroid checked? Hypothyroidism often clusters with celiac and it can make you gain weight (or make it difficult to lose weight no matter how good your diet is).

Personally, I'm not sure what my "normal" weight is supposed to be. I'm six feet tall, but I stopped growing when I was twelve years old. I was skinny for a long time (with a thick waist), but at my worst point I was around 200 pounds. I was eating a lot of processed foods and dairy products... stressed out from graduate school. Right now I'm 170 and I'm satisfied with that. My BMI is in the midrange of "normal."

ShayFL Enthusiast
ShayFL
Posted

I agree with having your thyroid checked. I was severely hypo and skinny. Doctors would not dx me because I was thin and had D all of the time. I just didnt fit the textbook picture of hypothyroid. When my labs finally got bad enough and I took a copy of the new TSH ranges, I got dx and properly treated. It was the best thing that had ever happened to me healthwise. I improved greatly.

Ask for:

TSH (3rd generation)

Free T4

Free T3

Both antibodies for thyroid

Ferritin

B12

Vitamin D

While you are at it.....

gfjayhawk Rookie
gfjayhawk
Posted
  • Author

Thanks for the replies! I have had my thyroid checked, and everything came back normal. My BMI used to run around 19, while it's currently 24.5. I'm eating a healthy diet, though I could probably eat more vegetables. I'm trying to limit refined carbs and focus more on protein, fruits and vegetables. I can tell that I am a bit more muscular than before, but I'm sure that most of this weight is not muscle. <_<

ShayFL Enthusiast
ShayFL
Posted

Can you post your labs for thyroid. I was told I was "normal" for 12 years when I was severely hypo. None of my doctors knew and the labs didnt have the NEW TSH ranges. The new ranges are from .3 - 3. I just saw recent labs yesterday from someone whose lab was still using 6 as the upper range for TSH!! :huh:

gfjayhawk Rookie
gfjayhawk
Posted
  • Author
Can you post your labs for thyroid. I was told I was "normal" for 12 years when I was severely hypo. None of my doctors knew and the labs didnt have the NEW TSH ranges. The new ranges are from .3 - 3. I just saw recent labs yesterday from someone whose lab was still using 6 as the upper range for TSH!! :huh:

I don't have the labs right now ... will have to ask the doctor. How likely is it that I suddenly developed thyroid issues at the same time I went gluten-free?

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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