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Ideas Of Other Things I Need To Do...

RangersFan

By RangersFan
in Coping with Celiac Disease

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RangersFan Newbie
RangersFan
Posted

I've been dealing with GI issues for about 3 years. I had a colonoscopy at age 29 and nothing remarkable was found. It took me 3 weeks to 'recover' from the prep they gave me. The doc also did a blood work up and other tests. I did not have a positive blood test for celiac disease. However, it was discovered I have hypothyroidism and I've been on medication for it for almost 2 years. My previous GI doc wrote me off as having IBS but I kept getting worse. My New Year's resolution to eat healthier, i.e. whole grains, backfired tremendously and I was sicker than ever. I went to a new GI doc who said the only thing left to be done was an endoscopy. It was scheduled, but then cancelled due to snow (we're in Texas so any snow is a major event here). I couldn't clear my calendar to get back in for a month, and I just couldn't bear the thought of another 30 miserable days. So I went gluten-free around Valentine's Day 2011.

Most of my symptoms improved quickly. I then noticed dairy was a problem, so I cut that out. I added it back slowly with the addition of Lactaid tablets. Then I stopped the tablets, and now dairy is a problem again, even with the tablets. I've cut it out entirely this past week but I'm still having issues. Because I've not received an official diagnosis of celiac disease, I don't have a doc to go to get help. I don't want to have a $1,500 medical test if I can avoid it.

I have two young (ages 6 and 3) kids and a husband who are not gluten-free. They support me and encourage me, but we have a "divided pantry" with my stuff on two shelves and their stuff everywhere else. After reading a lot on here, I now know I have to get rid of my wooden utensils and buy new cutting boards for myself. What other tips do y'all have for a "mixed" gluten-free/non-gluten-free house? I do have my own toaster, I learned that early on. Any ideas or little tips will be greatly appreciated!!

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txplowgirl Enthusiast
txplowgirl
Posted

Hi Rangersfan, BIIGGGGG Welcome!

Well, first off if hubbie's not going gluten free with you, he needs to brush his teeth after eating gluten before he can kiss you. MAJOR Contamination. Need new collander, separate containers as in butter, peanut butter, jellies, mayo, mustard. Check your meds, lotions, shampoos, household pets, either need to take them gluten free or have someone else feed them and if you pet them make sure you wash your hands immiediately after. Wipe the refrigerator handles down, doorhandles, all surfaces. In my opinion with the little ones I would use latex surgical gloves when I fixed their sandwiches. Because with all the gluten flying around i'm sure in the midst of confusion you would forget that you had gluten on your hands and eat something of yours and you would gluten yourself.

That's just a few things I can think of at the moment. Hang in there and hugs to you. I'm sure others will jump on here and give you other suggestions that I havn't thought of.

Txplowgirl

eatmeat4good Enthusiast
eatmeat4good
Posted

If you must have a gluten mixed kitchen, just really try to ban wheat flour. It hangs in the air and the dust lands on everything. It can make you sick by breathing it in and you will be sick cause it sticks to the mucous membranes and you then swallow it. and then the fun begins. If there is any way to ban flour you may be able to manage a mixed kitchen.

sa1937 Community Regular
sa1937
Posted

Welcome, RangersFan! Personally, I'd try to start making a lot of naturally gluten-free meals (fresh meats, fruits, rice and veggies for example). A lot of the things I ate before my diagnosis are things I still eat today. I think I'd totally freak having a mixed kitchen so everything you can do to minimize your risk will be so well worth it.

I agree with eatmeat4good. I'd try everything in my power to ban wheat flour. As far as cereals are concerned, Chex has several varieties that are gluten-free and Post came out with gluten-free Cocoa Pebbles, Fruity Pebbles and I think Cupcake Pebbles (boxes are marked gluten-free). For pancakes, gluten-free Bisquick works well. Merely choosing one brand of chips, for example, over another would be helpful so you could gradually have more things on hand that the whole family could eat.

I am able to use Lactaid milk without a problem. Lactaid tablets never did anything for me. For the past few months I've started adding more cheeses (cheddar, Mozzarella, etc). Breyers makes a lactose-free ice cream, which is the same price as their other ice cream.

You might want to check the Recipe section as there are a lot of good ideas there. And ask a lot of questions you might have...someone is sure to come up with more ideas for you.

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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
      High DGP-A with normal IGA

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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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