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Struggling...

Evie4

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Evie4 Apprentice
Evie4
Posted

So I am 100% gluten and dairy free now since I got my labs results Sep 18th and this round of my cyclic IBS is worse than it has been in years. I've had so much pain and fatigue and just feeling crappy that I missed a couple days of work this week

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mommida Enthusiast
mommida
Posted

Just want to let you know, My cyber should is here to lean on. Whine away! ;)

ang1e0251 Contributor
ang1e0251
Posted

I'm sorry you're feeling bad! My cycles are the worst too. My dr finally put me on continuous birth control to stop them.

You could be one of those people who starts out crappy then gets better over time. You might want to lay off the gluten-free processed foods for a bit. Those alternate grains can be rough on your digestion while you're healing. Back off to basic whole foods for a bit and see if things don't improve.

tarnalberry Community Regular
tarnalberry
Posted

Outside of removing gluten and dairy, how has your diet changed?

Are you now consuming soy milk where you weren't before?

Are you now eating significantly more corn or rice than you were before?

Are you getting less fiber because you used to get fiber primarily through whole wheat/oats/etc.?

Are you eating more of any particular foods?

You may have other intolerances - either foods that you really can't eat without feeling bad, or foods that you have to limit how much you have in order to avoid symptoms. (Soy, for instance, I think affects many people this way. How much soy generates symptoms varies significantly, of course.)

Evie4 Apprentice
Evie4
Posted
  • Author
Outside of removing gluten and dairy, how has your diet changed?

Are you now consuming soy milk where you weren't before?

Are you now eating significantly more corn or rice than you were before?

Are you getting less fiber because you used to get fiber primarily through whole wheat/oats/etc.?

Are you eating more of any particular foods?

You may have other intolerances - either foods that you really can't eat without feeling bad, or foods that you have to limit how much you have in order to avoid symptoms. (Soy, for instance, I think affects many people this way. How much soy generates symptoms varies significantly, of course.)

Thanks for responding everyone. I have been careful to not introduce new foods into my diet and I actually decided to stay away from gluten-free baked goods for now for the very reason that I read of other people having problems with gluten-free flours. I probably have eaten more fruit than usual and likely more rice. I'm avoiding soy--I think it can cause issues with me. Very little corn and been avoiding legumes just to be safe. I cut down coffee comsumption to one cup and do a rice milk/coconut milk mix for "cream". I've cut tea out for months now. Nothing with yeast in the past few weeks. No prepared foods. I did have potato chips week before last, but I decided I'd give those up for now too (don't really need those calories and I only get them a couple times a year anyway).

I guess maybe the coconut milk could be a no-no. I sure hope not. I use it in cooking occasionally, so it isn't new to my system. I'll keep my eye on it. My capuccino is my one indulgence...I'll be so sad if I can't have at least that.

Evie4 Apprentice
Evie4
Posted
  • Author
I'm sorry you're feeling bad! My cycles are the worst too. My dr finally put me on continuous birth control to stop them.

You could be one of those people who starts out crappy then gets better over time. You might want to lay off the gluten-free processed foods for a bit. Those alternate grains can be rough on your digestion while you're healing. Back off to basic whole foods for a bit and see if things don't improve.

I thought about the pill before...hoping it might help. But when I did take it in my twenties, even the lowest doses made me sick in the morning. I nailed my symptoms to the hormone fluctuation...not fair! :angry: Heaven only knows what might happen when "the change" comes!!!!!!

ang1e0251 Contributor
ang1e0251
Posted

I actually am on the Nuva Ring now. I resisted but it's actually the best I've been on. It's gentle with low doses of hormones and you insert it once a month. Now that I'm getting older, dr wants me to have a vaginal ablation to stop my periods. I'm wondering what will happen to my hormones if I'm off all the stuff. Past experience has not been good!

Oh well, don't have to worry about it now. Can't afford it.

Take a look at the thread for the SCD diet. I'm not on it but I do follow some of it's ideas that have helped me. Maybe something on there will jump out at you and help you. I hope it does!

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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

      By captaincrab55 · Posted

      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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