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Any suggestions please help


Morenaroo

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Morenaroo Newbie

Recently I have been diagnosed with celiac. I am aware there are hidden glutens in many of our foods. Currently I am in a celiac flare up/inflammation.

Most times after I eat I visit the bathroom within 30-60 minutes and my stomach is extremely bloated which feels like my stomach is bruised. 
Sometimes I don’t eat because it’s easier than the alternative. 
When I fast I drink water and bone broth.
Because my issue has been going on for years I am extremely fatigued and food intake does not give me energy.

I am asking for recommendations, recipes and overall food that helps.

I am working with a holistic doctor and a GI doctor to help with this flare up.

Thank you,

Mo

 


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trents Grand Master

Welcome to the forum, Morenaroo!

Sounds like the issue for you is learning where and how gluten is hidden in our food supply, particularly processed foods. There is a definite learning curve for avoiding gluten. Takes a year or two but you eventually develop a sixth sense of what to avoid. Perhaps this will give you a jump start:

Everything must be scrutinized: food, medications, supplements, oral hygiene products, chewing gum, lip balm, etc. Studies show that most people who believe they are eating gluten free are actually eating lower gluten but not gluten free. This is particularly true of those who still eat out.

The other part of this is correcting vitamin and mineral deficiencies that have inevitably developed over the years of not being diagnosed and the resultant damage to the villi that line the small bowel. This is the area of the intestinal track where essentially all of our nutrition is absorbed. When the villi are worn down by celiac disease, absorption of nutrients becomes compromised. We routinely advise people to on a high potency B vitamin supplement, plus sublingual B12, at least 5000 IU of D3, magnesium citrate or magnesium glycinate and zinc. Make sure all vitamins and supplements are gluten free. Costco's Kirkland and Nature Made products are generally a good choice.

Scott Adams Grand Master

We have tons of gluten-free recipes in this category:

https://www.celiac.com/celiac-disease/gluten-free-recipes/

knitty kitty Grand Master

@Morenaroo,

Gastrointestinal beriberi is caused by a deficiency in Thiamine Vitamin B1.  The symptoms I had are similar to what you describe. 

Here's more information...

Gastrointestinal beriberi: a forme fruste of Wernicke's encephalopathy?

https://pubmed.ncbi.nlm.nih.gov/29982183/

And...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

High dose Thiamine corrected my symptoms!

Hope this helps!

Wheatwacked Veteran
(edited)

Check your vitamin D blood level.  Normal in summer is 80 ng/ml (200 nmol/L).  I require 10000 iu a day to keep it there.  Vitamin D at higher levels modulates the immune system.

For energy heres my current list.

  • Thiamine  500 mg
  • B3 500 mg
  • B5 500 mg
  • B12 1,000 mcg (1 mg)
  • Taurine  1000 mg essential antioxidant amino acid
  • Choline 500 mg - required for fat digestion.
  • Magnesium Citrate - 500 mg I add two ounces of the Grape flavor kiqud to 20 ounces of water.
  • Nori or Kelp for iodine  - muscle tone, thyroid health

In the morning I have coffee or espresso, Kelp and a Red Bull.  Red bull is only essential vitamins needed to turn glucose to energy, minerals, real sugar and flavoring.  No exotic herbs, just plain nutrition.

I eat mostly garden vegetables, salmon, eggs, beef.

On 7/19/2023 at 12:01 PM, Morenaroo said:

ometimes I don’t eat because it’s easier than the alternative. 

Been there.  A lifetime of coffee and cigarettes to subdue hunger.

But, as I remind myself often, Eating is Not Optional.

Edited by Wheatwacked
  • 4 weeks later...
patty-maguire Contributor

Other posters have giving good advice for recognizing gluten in your food.  To address your ongoing bathroom issues, I have 2 suggestions:

1. At least for a while, avoid gluten free processed foods.  They often contain ingredients like emulsifiers and starches that can be hard to digest.  If you focus your diet on naturally gluten free whole foods, you may find that the inflammation settles down.  A gluten free version of the Mediterranean diet is a good template.  Also look up the Fasano diet.  Dr. Alessio Fasano who is a world renowned celiac expert recommends this for his patients who continue to have issues on a standard gluten free diet.

2. Consider if you may have other food intolerances.  Lactose intolerance is very common among newly diagnosed celiacs.  Try cutting out dairy and see if that helps.  Once your gut heals you may be able to re-introduce dairy products.  Most recommendation are 6 months to a year.  Other common intolerances among celiacs are oats (even gluten-free oats), eggs, soy.

All the best.  You've got this, it's just a bit of a learning curve.

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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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