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Periods Off Diet Do They Really Have An Impact?

UnhappyCoeliac

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UnhappyCoeliac Enthusiast
UnhappyCoeliac
Posted

Been of my gluten-free diet for a week now, indulging in any normal food I feel like. I am returning tommorow as my symptoms are fairly limited but I have been naturally slipping more, and a touch of dirhea.

Anyone I will go back on for 4-6mths + now.

At some point this rebellion builds up though, sick of policing food, sick of not feeling normal, sick of being stared at while eating bunless burger, sick fo REGULATION of my life. So hence I go crazy eating all my former favourite foods, then after a week or so I worry about damage I am doing and I hop back on the wagon

How will this affect me? Doc told me he has diagnosed someone 88 with celiac so this guy had had a long life with it not regulating diet at all. I ask because I am travelling oseas for the first time soon, and am most likely not going to be missing out on the taste of the world due to this disease. I will follow it up by 4-6mths each side gluten free though.

My last test result said I had fully recovered besides slightly raised anti bodies, that was in 3mths of GR so yeh someone talk to me, I am sure other people must do this as well, maybe not on this site but three people I have met all in RL at all times say they dumped the diet somewhat

Is a week off really going to do much? :(:huh:<_<

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Been of my gluten-free diet for a week now, indulging in any normal food I feel like. I am returning tommorow as my symptoms are fairly limited but I have been naturally slipping more, and a touch of dirhea.

Anyone I will go back on for 4-6mths + now.

At some point this rebellion builds up though, sick of policing food, sick of not feeling normal, sick of being stared at while eating bunless burger, sick fo REGULATION of my life. So hence I go crazy eating all my former favourite foods, then after a week or so I worry about damage I am doing and I hop back on the wagon

How will this affect me? Doc told me he has diagnosed someone 88 with celiac so this guy had had a long life with it not regulating diet at all. I ask because I am travelling oseas for the first time soon, and am most likely not going to be missing out on the taste of the world due to this disease. I will follow it up by 4-6mths each side gluten free though.

My last test result said I had fully recovered besides slightly raised anti bodies, that was in 3mths of GR so yeh someone talk to me, I am sure other people must do this as well, maybe not on this site but three people I have met all in RL at all times say they dumped the diet somewhat

Is a week off really going to do much? :(:huh:<_<

You risk dying painfully of intestinal cancer. Up to you, of course.

tarnalberry Community Regular
tarnalberry
Posted

Yup, your chances of intestinal cancers, blood cancers (e.g. lymphoma), and nutritional deficiencies (e.g. aenemia and osteoporosis), and developing other auto-immune conditions (like type 1 diabetes), all go up. In some cases, significantly. It's absolutely your choice, but no matter how careful you are, there is a risk of contamination and microscopic amounts of gluten getting in to your body every day. Your body has to repair the damage caused by this, and can likely take care of it, but then giving it this huge insult... Eh... It's not without it's consequences.

(Don't let one anecdotal piece of evidence fool you. Plenty of people die *earlier* due to celiac. Average decrease in life span due to untreated celiac? 10 years.)

Mrs. Smith Explorer
Mrs. Smith
Posted

Believe me, if I had found this out a lot sooner, like you I would have done it in a second and saved myself and my family a ton of heart ache and medical bills! I however did not know until I was very ill, couldnt have babies, and very deficient. I would not recomend going back on gluten AT ALL....trust me its not worth it. You should feel lucky that you are so young and can save yourself a lot of pain and misery because it will only get worse. I felt great at 22 and by 28 I was in declining health fast! 2yrs later, I am just now getting back my life. DONT DO IT!

ang1e0251 Contributor
ang1e0251
Posted

If I recall your main reason for testing were neurological problems affecting your gait and strength. You were afraid of MS and relieved when the diet helped these problems. Do I have your story?

So I guess you have to take yourself back to that moment when you were your sickest and most scared. Is that where you want to be again? I know, you don't like to refer to it as sick because your symptoms were mostly away from the gut. But you were sick and that's what you need to admit to yourself.

The problem with see-sawing back and forth with your health is you don't have a little window into your insides where you can see when damage is done. It just sits there rather silently then gives you the Big Whammy! Would you put a little sugar in the gas tank of your car for a week and then if it doesn't gum up too bad stop doing that for awhile hoping everything will be OK? You wouldn't because an engine can't run on sugar as fuel. It will damage the engine. Your engine can't run on gluten. It will damage it. Your body has been telling you that but you want your own way and don't want to listen to it. Your body will find a more drastic and, heaven forbid, maybe permanant way to get your attention in the long run.

JNBunnie1 Community Regular
JNBunnie1
Posted

If it helps, I can give you a graphic description of what it was like to watch my father die of leukemia. I promise, you don't want to go there.

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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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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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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