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I Went For My Follow Up Appointment From The Biopsy...

Jamie

By Jamie
in Related Issues & Disorders

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Jamie Contributor
Jamie
Posted

I am very confused.... I went gluten-free for a month... then I ate whatever I wanted for a month so not to get a false negative for the biopsy I had last Thurs. I am reading all these posts about people getting very thin before being diagnosed and then gaining a lot of weight after being diagnosed. I gained about 10 lbs in the past month and a half. I am a big excerciser and a healthy eater... my normal weight, which I have been at for years, has been anywhere between 98-102. I went in today and I was suddenly 110. I asked him what was going on with me and he said he didn't have an answer to that. He looked at all my levels (from a blood test I had taken before I had any idea I was celiac) and said that my vitamin levels were good.. so I am absorbing vitamins. Does anyone have any idea what this could be? Could it be in relation to celiac? Or possibly another problem linked to celiac?

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ang1e0251 Contributor
ang1e0251
Posted

It's not as simple as everyone being thin before diagnosis. Many are overweight with out of control weight gain. I'm one of those. The weight comes on for me with the Gluten. Each person has individualized symptoms.

I only gain weight now when I eat gluten or another substance I am sensitive to. I also can gain weight when I eat alternate grains. They seem to pack on the pounds like crazy. Were you eating gluten-free breads?

Maybe an example of your diet would be a clue to weight gain.

Jamie Contributor
Jamie
Posted
  • Author
It's not as simple as everyone being thin before diagnosis. Many are overweight with out of control weight gain. I'm one of those. The weight comes on for me with the Gluten. Each person has individualized symptoms.

I only gain weight now when I eat gluten or another substance I am sensitive to. I also can gain weight when I eat alternate grains. They seem to pack on the pounds like crazy. Were you eating gluten-free breads?

Maybe an example of your diet would be a clue to weight gain.

well... since the symtoms started ... about last Jan... (yet I wasn't diagnosed officially until this past Monday)... I have always eaten a lot of gluten, yes. It is my whole diet. What can I say.. I love bread. Grilled cheese, PB&J... not to mention my favorite foods are pizza and mozzarella sticks. I eat those in moderation though. As for the normal diet I have always been on... I always thought I was eating healthy because I was getting a lot of fiber, whole grains and vitamins from breads, cereal products.. things like that. Then in Dec my doctor told me I had celiac disease through blood work. I went on a gluten-free diet for a month. During that time I tried gluten free breads but hated them and the fact that they offerd hardly any nutritional value. I mainly stuck to fruits, vegies and protein.. like chicken, turkey and tuna. I also snacked a lot on chips and snacks that are gluten free already.. like many Frito Lays products and Tostitos. But what is interesting... now that you mention it.... I had to eat Gluten for about a month and 1/2 before my biposy... in that time alone I gained 10lbs.... wow... writing all this out I think I am having a revelation and figuring it out. Do you think possibly my Villi started to heal and then throwing gluten back in may have triggerd a weight gain?

ang1e0251 Contributor
ang1e0251
Posted

Not being a medical expert I can't tell you why weight gain can happen when eating gluten. My own opinion is it sets up an inflammation in my body and I retain water like crazy. If I just have a little, within a day or two, I'm in the bathroom a lot and the scales backs off overnight for me. Of course the years of eating gluten not knowing what it was doing to me, kept on a bunch of pounds that are now not just water.

And it's not the only thing that can fluctuate my weight; stress, eating alternate grains. whether I sleep or not, all contributes. Like last night, I ate a few crackers of alternate grains and had a night where my sleep was disturbed throughout, grand-puppy couldn't sleep. This morning the scales had shot up 3 pounds from the morning before. Keep telling myself not to panic, I know the reason and it will come off tonight if I have a good sleep.

Keep all this in mind. A good way in the beginning is to keep a food/symptom journal because it can show you the patterns even if you can't see them. Just like you said that writing it down made it clear to you, the journal can help. There will be times when you can't figure things out and the journal can help the focus. Let's face it, we like to deny what's right in front of our face. I know I do. The journal can also help you when dealing with others because as you start talking about celiac disease, others are going to seek you out about food allergies and diet and fitness. You sound like the kind of person who likes to help others live fit. Your own experiences will be part of your job experteze.

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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
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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
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      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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