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Now What?

The Kids Folks

By The Kids Folks
in Coping with Celiac Disease

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The Kids Folks Apprentice
The Kids Folks
Posted

Hi - I'm fairly new to the board. Been gluten-free since October 11th and was finally starting to feel amazing!! I haven't been diagnosed medically (no blood work or biopsy) but all of my symptoms have vastly disappeared, no more insomnia, IBS, monthly "girl" issues, depression, brain fog, etc. I should say that I joined my 7 yr old son when he was having chronic C problems and slow or no growth. Doctor did blood work on him, which came back neg - we decided against the biopsy at this point b/c following our ped and GI orders to treat the symptoms landed him in the ER. He also has improved and has gone up a size in clothing and has grown over and inch!! Anyway - I ramble....

Since the holidays which started on the 23rd for us we have been entertaining, entertained and well glutened!! My son seems to be doing well since my husband and I were vigilant on what he could and couldn't eat. I however, was not so careful and now feel like crap!!

My insomnia is back, my mood swings and brain fog, lack of energy, IBS and bloat is at an all time high. :(

My question to the group - now what can I do to get back to my new gluten-free normal QUICKLY!! I really would like some magic to occur. Wishful thinking I know, but had to ask and thought that maybe someone had some idea of foods that help while my body is going through detox again!

The Kids Folks

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JNBunnie1 Community Regular
JNBunnie1
Posted
Hi - I'm fairly new to the board. Been gluten-free since October 11th and was finally starting to feel amazing!! I haven't been diagnosed medically (no blood work or biopsy) but all of my symptoms have vastly disappeared, no more insomnia, IBS, monthly "girl" issues, depression, brain fog, etc. I should say that I joined my 7 yr old son when he was having chronic C problems and slow or no growth. Doctor did blood work on him, which came back neg - we decided against the biopsy at this point b/c following our ped and GI orders to treat the symptoms landed him in the ER. He also has improved and has gone up a size in clothing and has grown over and inch!! Anyway - I ramble....

Since the holidays which started on the 23rd for us we have been entertaining, entertained and well glutened!! My son seems to be doing well since my husband and I were vigilant on what he could and couldn't eat. I however, was not so careful and now feel like crap!!

My insomnia is back, my mood swings and brain fog, lack of energy, IBS and bloat is at an all time high. :(

My question to the group - now what can I do to get back to my new gluten-free normal QUICKLY!! I really would like some magic to occur. Wishful thinking I know, but had to ask and thought that maybe someone had some idea of foods that help while my body is going through detox again!

The Kids Folks

I say activated charcoal, dandelion root tea, no dairy for a while, and peppermint tea. And no caffeine, no matter how tempted. Try some melatonin at night to help the insomnia. And chamomile tea for a few hours before bed, that works great on me. Lots of tea!

Jestgar Rising Star
Jestgar
Posted

lots of tea. The extra fluid helps (me at least) flush the unpleasantness out of my body.

cat3883 Explorer
cat3883
Posted

I am feeling just like you. I have been gluten free since October 15th and have been doing wonderful. I tried being very careful over the holidays but something crept in. Before going gluten free my symptoms were headaches, fatigue, and brain fog. Now they also include stomach cramps and the big D. My gastro told me my symptoms would be worse. Boy he was right. I started feeling bad on Christmas Day. I know I am eating gluten-free now as I am only eating at my house. How long do these bouts last. I feel terrible.

JNBunnie1 Community Regular
JNBunnie1
Posted
How long do these bouts last. I feel terrible.

It depends completely on the person. There are some people on the board who feel sick for a day or less, then there's me who gets sick for weeks.

If you find your diarrhea getting out of control, don't be afraid to take Imodium.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Your story sounds like mine. I am so careful with my 8 year old son but not so much with myself. I ate a handful of those Reeses peanut butter bells a few weeks ago without reading the label. I would never allow my son to do that. Anyway, I got ill. I thought I was coming down with the flu but low and behold it turns out that those yummy candies contain wheat flour. What helps me get through those times is to drink lots of water and eat lots of fruit. I also need more sleep so my husband watches the kids while I get some extra zzzz's. I also know that I can't be far from the bathroom so I don't plan any outside activities for the next day or so.

ang1e0251 Contributor
ang1e0251
Posted

I agree with all the other posters with drinking lots of tea. The warmth seems to calm my stomach somewhat and you need all the liquids you can get if you have D like me. My favorite is Constant Comment decaf, it's just yummy and soothing.

I sometimes also feel ravenous when glutened so I allow myself to eat anything that's safe as much as my body needs. The sublingual B12 is also helpfull. I swear it shortens the length of the reaction.

Time on the couch and some family TLC is part of the equation. I hope you find some good remedies and find a way to eat out sometimes. This is making your world very small.

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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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