Newly diagnosed- hurting and don’t know what to eat

[laynuh]

Hi all- 

I was just diagnosed with a TtG of 224 and scalloping w severe to moderate damage in my small intestine. I’m anemic, have no vit D and low B12. I also have lupus. 
I feel awful. 
Mostly just tolerating rice, gluten-free rotisserie chicken and protein shakes & vitamins. 

Still having diarrhea 7x a day and nausea but not as gnarly (I’ll spare the details lol)  as when I was eating gluten. 
 

What do you eat when your system is so fried? I want to heal so badly. 
 

[Scott Adams]

I'm sorry to hear about how bad you're feeling, but welcome to the forum! Do you happen to have the positive cut off marker for your TtG test? Yours does sound very high, and many doctors are now diagnosing celiac disease on blood tests alone, if they reach 10x the cut off for a positive celiac test.

In any case, at least you found your answer and can now begin a gluten-free diet, and hopefully full recovery.

After I went gluten-free I ate a lot of steamed rice with chicken as well. You may want to try this diet for a while, at least until your symptoms go away:

 

[trents]

laynuh, welcome to the forum!

How long ago were you diagnosed with celiac disease? It can  take two years or longer for complete healing of the small bowel villi after going gluten free.

What do you mean by "scalloping"? That term is not familiar to me?

I wonder if you wouldn't benefit from steroids, at least short  term, to quiet your immune system and allow some nutritional recovery. If you are pooping seven times a day I would  think food isn't staying in your gut long enough  to benefit you much.

Edited June 9, 2021 by trents

[Scott Adams]

This article talks about scalloping:

"The characteristic appearance of the surface of the small intestine in celiac disease includes superficial ulcerations that are commonly linear, flattening of the folds, notching or scalloping of the folds and a mosaic-like pattern. However, the surface may appear normal and only under microscopic examination of samples will the lining show signs of gluten-induced injury."

 

[GF-Cate]

I'm sorry you're feeling so bad. It's really hard to be in pain and to also be exhausted from nutrient deficiencies.

I would recommend switching to chicken you cook at home (I'm assuming the rotisserie is store bought) to eliminate any chance of gluten contamination. 

Closely examine any other foods/beverages, medicines, vitamin supplements, spices, lipbalm/stick, gums/mints, dental care products, etc., etc. - for all possible sources of gluten contamination - even residue from pet food when you feed a pet can be an issue (if it gets on your hands or if a pet licks your face) or kissing if the person consumes gluten.

Chicken and white rice are also two of my go-to's when I get glutened. Also banana. Certified gluten free bread for toast with good quality butter/preferably grassfed - if you can tolerate dairy (a source of certain vitamins). Sometimes people can't tolerate dairy when the gut is damaged - you may need to avoid for now.

Bone broth (chicken or beef, preferably homemade - can be done in crockpot or instapot) can be very soothing and healing to the gut (drink from a mug or make a soup with it).

Collagen power, which dissolves in hot liquid  and has virtually no taste, is a decent source of protein, very easily digestible, and healing to the gut.  Vital Proteins is the one I use.

Well cooked meats, vegetables and fruits are often easier to digest. gluten-free grains may be best avoided for now until your digestive system has healed some.

One thing that I've had good success with calming down my gut is activated charcoal. I take one or two for a day or two (not for an extended period of time - just as my last resort if I get glutened really bad). I find it kind of works as a reset. I use it as infrequently as possible as it can affect nutrient absorption, but it really has helped to get back on track.

This has some more great suggestions that would be applicable:

https://www.amymyersmd.com/article/recover-glutened/

As for nutrient supplementation, you may have better luck for now using liquid vitamins (I find pills can be hard in my digestion). B12, vitaD, and multi vitamin at least.

B12 - I use Pure Encapsulations liquid B12 5,000mcg

Vita D - I use Carlson's liquid

Iron - I use Garden of Life My Kind Organics liquid (non-heme, which is not as good as heme, but all I can tolerate)

 

 

 

[GFinDC]

Hi laynuh,

The first thing to try for your vitamin D replenishment is to get out in the sun between 10 AM and 2 PM.  Your skin naturally makes lots of vitamin D when exposed to sunlight.  At this time of year sunlight is the fastest way to improve your vitamin D levels.

I agree that dairy should  be avoided.  The enzyme that digests cow milk sugar is made by the villi lining of the small intestine.  Since your villi are damaged or missing, you won't be able to properly digest dairy.  That will result in lactose intolerance symptoms that include diahhrea, gas, maybe some pain too..

You can try some pysillium husks to help with diahhrea also.  A teaspoon in whatever you are eating should help.

You may want to supplement with digestive enzymes and Betaine HCL for a while.  They can help to break down and process foods.

I suggest you go on a whole foods diet with no processed foods.  Meats, eggs, veggies and nuts and fruits are good food and are usually gluten-free.  Another grain to avoid is oats as some celiacs react to them.

Try to not eat the same foods every day.  We can become sensitized to foods we eat often while our guts are inflamed.  So vary the foods every few days.

You should get a calcium / vitamin D / Boron supplement also.

[Sally238]

First of all don't be rush. I'm really sorry to hear about how bad you're feeling now. I think that today there are som many kinds of recipes for celiac disease patients. There is more awareness and more knowledge so I'm sure your feeling will be better. I'm also vegan and I find so many new recipes almost every day. I love to make often this ricotta cheese salad. There are so many types of salads you can make easily so you don't need to have bad feeling at all. 

[Kate333]

Hi Laynuh.  

My TTG was also 224 when I was first diagnosed in late 2019.   It's now down to near normal (I adopted a strict gluten-free diet, no packaged, processed foods).  I know it's hard not to be impatient, get discouraged.  But, as others here have said, healing happens gradually.  Younger folks typically notice improvement of the gluten-free diet more quickly than others but your body may take a bit longer since you had a lot of gut damage.   I take Calcium with D3 supplement and B12. 

Best of luck on your healing journey!

[grandmabecky]

i have been so overwhelmed sinced diagnosed less than a year ago also. it is so hard to cook for my husband because i would never expect him to eat the way i have to, so most the time i dont eat. my appetite is 0 and have lost over 90 pounds in less than a year. just hang in there like i am and hopefully we can handle without being overwhelmed.

[trents]

14 minutes ago, grandmabecky said:

i have been so overwhelmed sinced diagnosed less than a year ago also. it is so hard to cook for my husband because i would never expect him to eat the way i have to, so most the time i dont eat. my appetite is 0 and have lost over 90 pounds in less than a year. just hang in there like i am and hopefully we can handle without being overwhelmed.

Not a good long term solution. If you continue to skip meals like that to the tune of 90 lbs. per year your husband may be cooking for himself before much longer. Have you had a conversation with him about your need to eliminate wheat (and barley and rye)  from your diet? Is he in denial about the reality of celiac disease as a medical condition? I realize I many be treading on relational dynamics here.

I am a celiac but my wife is not. Yet, because she prepares most of what I eat, she has almost eliminated wheat from her own eating so as not to have to prepare two meals every time we eat. She will occasionally make some wheat biscuits for herself or crepes or pancakes but is careful to label things well so I don't accidentally consume them. What I am saying is that my wife has discovered that it is quite possible to live without wheat and eat well even if you don't have to for yourself. I will also say that it is much more likely for a celiac to get glutened (either by mistake or by cross contamination) when the rest of the family is still eating wheat. Some families commit to everyone eating gluten free in order to keep their celiac loved one safe. And many people find that when they commit to eating gluten free for the sake of their loved one they actually get healthier. For most people, a high proportion of calorie intake involves wheat and when they eliminate all those wheat bread and flour products they trim down and feel better. But skipping meals most of the time is not good and having no appetite is not good. You can't be getting the nutrition you need like that.

[Enigmah]

I am someone who will never be diagnosed...I went off gluten for 2 months when I realized that I would have to go back on it to be diagnosed.   I don't need to have the doctor give me a stamp of approval...to know what happens when a molecule of gluten just watches me going by...BUT, I do have a couple things to say that I think are important:  my initial reaction to this new life (initial as in from the doctor's office to my car) was to feel overwhelmed and sad.  I didn't allow myself to come home that way.  Here is why...I am old enough/have loved through enough to know that our attitude is what causes us to feel stuck.  Eating nothing but chicken and rice IS depressing...unless you live in a dump pile or scrounge through restaurant trash cans looking for supper.  To SO many in this world, warm chicken and rice would bring tears of gratitude.  It is about perspective.   I am NOT judging YOUR reactions, but my own.  I realized that I felt like I deserved to eat anything I wanted to...even if it were tearing holes in my gut and leaking fecal matter into my body!  Then I started realizing that I was upset because I might have to live on a strict meat/vegetable/fruit diet!   When I said that to myself, I started laughing....nearly uncontrollably.  Poor me, just all the veggies, all the fruits, all the meats (except don't play Russian roulette with rotisserie chicken....losing that will make you wish that you had of stuck to the original version, it hurts less).  I can even have starches.  As I slowly started seeing the VAST amounts of food that I could have instead of the little things I couldn't have...the world opened back up for me.  

I can't go into a grocery store without my lungs feeling like they are going to burst into flames...but thanks to this pandemic, I no longer need to.  Get creative...your spouse will live as well!  Make delicious meals and even finicky kids don't realize that they are "missing out" on anything!  

Also, it DID seem depressing trying to "enjoy" all those frozen gluten-free breads....don't do it if you can help it.....SO sad...gluten-free bakeries are all over the place....find one!  The first time you bite into a hot, fresh piece of bread will make your heart happy!

[trents]

"As I slowly started seeing the VAST amounts of food that I could have instead of the little things I couldn't have...the world opened back up for me."

Well said, Enigmah! How true! It's an appropriate contextual twist on the old adage, "Is your glass half empty or half full?"

[laynuh]

Thank you all for your kindness. These are such helpful suggestions and I will implement them. I am on week 4 and trying to be patient with how slow it’s taking me to feel better, have energy, stop having diarrhea... 
To be honest, after living with lupus and being on the max treatments for that (major immunosupression) and not improving, having to take leave from work- thinking that I was becoming permanently disabled- to  now find out that a lot of my ill health and extreme fatigue is likely due to florid celiac - its strangely a little uplifting in that eating the right things could profoundly impact my health for the better. 
My last days eating gluten were awful. I threw up for 4 hours straight one day and was averaging 15-20 bm a day. It was a good send off.  Byeeee gluten!
I will ditch the Costco rotisserie and cook chicken at home, will try AIP,  add liquid vitamins and fiber.  
I can see how this diet is hard and why people are saying the first year is a learning curve. Like, How do I know if I’m just healing, reacting to something else, or if I am being glutened?  
Sincerely, from the bottom of my heart thank you for your responses. 
So glad I found this forum  

 

[trents]

I believe the Costco rotisserie chicken at our Costco in Tumwater, WA is labeled gluten free but I'll try to remember to check that next time we get one. It doesn't seem to cause me problems. I'm not a particularly sensitive celiac so minor amounts of gluten as you might get in cross contamination may not trigger a noticeable reaction in my case.

[Posterboy]

On 6/9/2021 at 2:35 PM, laynuh said:

Hi all- 

I was just diagnosed with a TtG of 224 and scalloping w severe to moderate damage in my small intestine. I’m anemic, have no vit D and low B12. I also have lupus. 
I feel awful. 
Mostly just tolerating rice, gluten-free rotisserie chicken and protein shakes & vitamins. 

Still having diarrhea 7x a day and nausea but not as gnarly (I’ll spare the details lol)  as when I was eating gluten. 
 

What do you eat when your system is so fried? I want to heal so badly. 
 

Laynuh,

I have written the most about this....

I will try and be short as I can be.....I will link you to some blog posts and thread that might help you to read...

Pellagra today is being diagnosed as LUPUS Today!

Here is the pure research that shows it is happening....

Entitled "Pellagra in a patient with primary Sjögren's syndrome"

https://pubmed.ncbi.nlm.nih.gov/24943141/

When people have Skin issues today....often it is diagnosed as LUPUS instead of Pellagra today....

See my Posterboy blog post about how Pellagra can be misdiagnosed as LUPUS today....

This thread might help you too!

As well as this Posterboy blog post that explains how these things are connected...

I wrote it so it might help others!!!

Maybe it will help you to read it...

Be sure to read the ADDENDUM it has  a lot more research links at the end of the blog post to help guide you back on the right track back (hopefully).

I will say a B-Complex with meals and a FAT Soluble B-1 like Benfotiamine, Lipothiamine, or Allithiamine and a Magnesium Citrate or Magnesium Glycinate always with MEALS will be helpful to you!

Most people will notice a difference after a couple months and many feel much better after 3 months but only IF you commit to taking these missing Nutrients (ingredients) IE  Vitamin and Minerals....for good health!

3 months is key....because you reach equilibrium/balance in your liver of your B-Vitamins after 3 months...

see this article on "Understanding nutrition, depression and mental illnesses" and why the 3 month mark is key...

I will quote their article on B-Vitamins...

B-complex vitamins

"Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood. Thiamine is known to modulate cognitive performance particularly in the geriatric population."
 

Because B-Vitamins are water soluble....they leak out.....and only by taking them 2x or 3x a day will you accomplish your goal of putting your Skin issues occurring with  your LUPUS in Remission!

quoting from the Posterboy's blog post on the Threeway model of Genetics, Nutrition and STRESS!

So you or others want have to go back and read it all unless you want too....but I do recommend it if you want dig deep into the details.....as they say...."The Devil is in the Details"

"To see if this is true we have to dig deep in the forest of data….and see what it tells us…

See this research entitled “Pellagra in the USA: unusual manifestations of a rare entity”

https://casereports.bmj.com/content/12/9/e230972

On the surface….it is just as we would suspect…Pellagra is rare in the USA…right only in Alcoholic’s right….

But we if we dig a  little deeper….we learn something from this good research…

Quoting from their abstract…

“They/She had adrenal function testing which revealed adrenal insufficiency. Vitamin testing revealed normal B12 and folate levels but undetectable levels of thiamine, riboflavin and niacin. Her symptoms and signs resolved entirely with appropriate vitamin supplementation. Niacin (vitamin B3) is essential for multiple metabolic pathways, and severe deficiency may cause clinical syndrome of pellagra, which is most commonly associated with diarrhoea, delirium and dermatitis.”

Notice the bolded Vitamin Deficiencie(S)….not one deficiency but many deficiencies culminating the a “Capstone” disease diagnosis….

Now why did this researcher not  say the  patient had Beri Beri (B1 deficiency), or Pellagra Sine Pellagra

(B2 deficiency) instead…they/she had ALL these deficiencies….

Because B-Vitamins don’t occur alone or uncomplicated….so I was right to say I had gone on to develop

(mostly) Pellagra ….except I didn’t  have Skin (dermatitis) problems like DH etc….so I had only developed

Pellagra Sine Pellagra instead…(so far)…

But I had already gone on to develop Thiamine deficiency aka Beri Beri and the doctor’s had already missed it….

So why should  I be surprised they missed me having a Riboflavin deficiency too!

What most people don’t know (even doctor’s) don’t realize today….and I have recently found out that Pellagra has been incorporated into Celiac disease today…..

Celiac disease is a three alarm metabolic (deficiency syndrome/disease) ramped up by each B-Vitamin you become low in

…..in time…. It is a Cascade….like falling domino’s….one falling triggers the others too fall as well…"

IF You don't take the B-Complex, Benfotiamine and Magnesium frequently you won't get the results you desire...

see the Posterboy blog that explains the importance of taking your B-Complex frequently IE with meals for at least 3 months...and the preferred form to take Niacin aka Vitamin B-3 in the Niacinamide form....a special non flushing form of Niacin again aka Vitamin B3.

https://www.celiac.com/blogs/entry/2109-whos-afraid-of-a-b-vitamin-you-neednt-bee-a-faq-on-niacinamide-and-how-to-take-niacinamide-and-why-you-would-want-to-in-the-first-place/

Taking the Amino Acid Tryptophan can also be helpful too because we use Tryptophan to synthesis 80% of the Niacin our body needs to keep Pellagra or LUPUS in your case at bay! Because your skin and our bodies GI membranes/tissues break down when rapid cell division breaks down and we don't have enough Niacin to repair them.

This short but good blog on it explains why Pellagra show up first in the GI tract and finally in the Skin....

Because of Rapid Cell division and high energy requirements needed to make our Stomach Acid!

Our stomach normally replaces itself every 2 to 3 months and without Niacin to help regrow our stomach lining.....we can't do this...and low and NO Stomach acid is the end result!

https://pellagradisease.wordpress.com/

Good luck on your continued journey.

NSAIDS and other Pain relievers like Ibuprofen can also interfere with our bodies ability to repair our stomach lining....leading to unchecked inflammation! and is what is happening in LUPUS and /or Pellagra going undiagnosed or in your case misdiagnosed as LUPUS instead of Pellagra today!

https://www.washingtonpost.com/lifestyle/wellness/perforated-ulcer-ibuprofen-dingell/2021/05/26/93f18ff8-bcc0-11eb-b26e-53663e6be6ff_story.html

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[GFinDC]

23 hours ago, trents said:

I believe the Costco rotisserie chicken at our Costco in Tumwater, WA is labeled gluten free but I'll try to remember to check that next time we get one. It doesn't seem to cause me problems. I'm not a particularly sensitive celiac so minor amounts of gluten as you might get in cross contamination may not trigger a noticeable reaction in my case.

The Walmart rotisserie chicken in 45701 zip code is safe for me, no reactions.  That being said, it is not uncommon for newly diagnose gluten-free eaters to react to many foods as their digestive system is damaged and needs time to heal.  So foods that bother a person at the beginning may be fine later on.

I'd suggest avoiding the rotisserie chickens though as it's better and safer to make your own food at the start IMHO.

Edited June 13, 2021 by GFinDC