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If Looks Could Kill

Adalaide

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Adalaide Mentor
Adalaide
Posted

I'd be dead. My husband had an appointment today with his endocrinologist today and I always tag along so I know firsthand what I need to know. Over the last few years he has been having increasing trouble controlling his blood sugar. During this time he has also had increasing bowel issues. Last fall he was told he has IBS. His mother is constantly weak, tired and has been battling lymphoma for many years.

So, unable to keep my mouth shut as the doctor offered suggestions I asked if it was possible that celiac could contribute to his increasing troubles with his spikes and lows. The doctor filled out the paperwork for blood work while my husband glared at me. Now I wouldn't wish celiac on anyone, but I also don't want to spend a decade watching my husband die of cancer while losing his feet a toe at a time and counting the days til he ends up on dialysis. (Okay, morbid but I this sort of thing just pops in my head.)

As an extremely picky eater, he would have significantly more trouble adjusting to a gluten free diet than I did. The doctor did suggest that even if the blood tests are negative that it wouldn't hurt to go gluten free and see if symptoms improve and if they do to try a little gluten again and if he gets sick again that it's obviously celiac. He mentioned that it's far easier today than it would have been a decade ago, although I doubt my husband finds that encouraging. (I could have kissed him, I didn't imagine I'd ever talk to a doctor who knows half as much as my limited knowledge of celiac.) All that's left for me to do is convince my husband, regardless of the test results, to go through with at least trying a gluten free diet.

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IrishHeart Veteran
IrishHeart
Posted

I would have done the same in your shoes. Those symptoms are just too closely related to gluten intolerance/celiac.

Kisses to that endo!! :lol:

However, since you are already gluten-free, converting the two of them will not be more work for you, in fact it will be less. (As I recall, MIL lives with you guys?)

Ask him to give it a go (no cheating!) for one month. That's it.

Make some special treats and he'll be hooked on gluten-free foods.

Bet him his blood sugars and bowel issues start to resolve.

and I bet....You will win this bet. :)

Adalaide Mentor
Adalaide
Posted
  • Author

I wish she lived with us, but no, it's her house. She wouldn't entertain the idea of making these changes in her life and frankly we don't have the kind of relationship where I would be even remotely comfortable talking to her about it. She's still convinced that all of my health problems are because of my bunny.

Right now I'm just hoping the test results come back positive. If they don't my husband will probably spout off about how I'm wrong (even though I'm not) and that will be the end of that. I did make Rice Krispie treats tonight which are one of his favorite snacks, hopefully I'll convert him one way or another. The logistics will be much easier but it'll be like trying to feed a picky toddler. :lol:

AVR1962 Collaborator
AVR1962
Posted

Good for you Adalaide, I don't know why some people wnat to close their ears but you are opening to options, options which are all good to investigate. My husband's health is not as good as it could be, has had a life-long issue with allergies and just keeps taking meds. I have repeated aske him if her thought about actually finding out what is causing hime issues and he repeatedly drgas his feet.

If the results don't come back positive and he starts with the "I told you so," at least you now know and there is no longer the guessing game.

Juliebove Rising Star
Juliebove
Posted

Have they looked at possible gastroparesis? I have it. It can make blood sugar very hard to control. Mine started out with bowel troubles and then progressed to throwing up.

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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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