New diagnosis; help me understand initial recovery period

[olioil]

Hi all! After many tests, my doctor has tentatively diagnosed me with celiac disease. (Long story short, I have the genes and the endoscopy showed expected damage, but my blood tests were all negative). I have recently started a strict gluten-free diet, including swapping out all the equipment in my shared kitchen. Since starting the diet more strictly, I feel like I've had new digestive issues crop up.  Like before, I feel sick after almost every meal, and often have pain, GI symptoms, etc.  But in addition, I also feel nauseous much more often, and a bit more dizzy.  I've been off and on a FODMAP elimination diet for months before finally getting this diagnosis, and I know I don't eat very well due to my restrictions and other factors - I may simply have some nutrient deficiencies that are getting worse.  But in general, does anyone know if it usually gets worse before it gets better?  I'm not really eating different foods since I already was used to FODMAP, so I'm not sure it's my body reacting to a different diet.

I'm an adult, and I've been having digestive problems for years now, with many different ideas thrown out.  I'm somewhat desperate for celiac to be the "final one" so that I can actually feel better on a gluten-free diet.  I know that I have lactose intolerance as well, at bare minimum.  Is this something where I just have to ride it out until my gut heals to feel any change, or should I be pushing to investigate other intolerances as well?

[Scott Adams]

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. 

 

   Also, is your diet 100% gluten-free? 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[olioil]

Hi Scott,
Thanks for your kind reply.  I have a follow-up appointment with my GI pretty soon so I'll try and speak with them regarding those deficiencies.  Maybe I can get tested or I can look into good supplements that are totally gluten-free.

And to the best of my knowledge, I am 100% gluten-free.  I tried to do as much research as possible to make sure I'm not getting any cross contact, but I am in a shared kitchen so I can only control my own actions. I have only been 100% gluten-free for around a week or two though (For like another week beforehand I was gluten-free but still using shared kitchen equipment).  I guess it's too early to tell anything, it's just disheartening to feel worse after trying to put effort into being gluten free.

[trents]

Are you still consuming oats? Even gluten free oats?

[olioil]

Actually, yes, I am still eating oats. I have been eating the gluten-free instant oats as my main breakfast since my diagnosis (previously, I ate toast). So I’ve been having a lot more than I usually did. 
 

In my initial research I thought it was fine to leave oats in unless I was having problems, but it seems that many people say it’s better to cut oats out during the initial recovery phase. I can switch to a different breakfast and see if that helps. 

[Russ H]

1 hour ago, olioil said:

Hi Scott,
Thanks for your kind reply.  I have a follow-up appointment with my GI pretty soon so I'll try and speak with them regarding those deficiencies.  Maybe I can get tested or I can look into good supplements that are totally gluten-free.

And to the best of my knowledge, I am 100% gluten-free.  I tried to do as much research as possible to make sure I'm not getting any cross contact, but I am in a shared kitchen so I can only control my own actions. I have only been 100% gluten-free for around a week or two though (For like another week beforehand I was gluten-free but still using shared kitchen equipment).  I guess it's too early to tell anything, it's just disheartening to feel worse after trying to put effort into being gluten free.

The generally accepted as safe level of gluten for people with coeliac disease is 10 mg (although some people are more sensitive and some people less). This is equivalent to a piece of bread the size of a small pea. Even with shared utensils, you can prepare safely so long as you make sure everything is clean. Stainless steel and non-stick pans are easy to keep clean. Don't share unglazed cast iron cookware as the rough surface traps food. Don't share the toaster - use toasting pouches if you have to. Also, watch out for forks and make sure to clean between the tines.

People with active coeliac disease often react to other foods because the gut barrier is damaged and also because the antibodies to gluten they make as part of the disease can cross-react to other foods. This reaction generally fades as the gut heals and antibody levels falls but this can take a year or more. Note that you can still have coeliac antibodies but they remain in the gut wall without escaping into the bloodstream, so causing a negative blood test.

It took 3 months for my bloating, burping and reflux to resolve, other symptoms even longer.

Edit: Definitely cut out oats. When the disease has fully gone into remission, try reintroducing them to see if you react. In most people (90-95%) oats don't trigger the coeliac disease immune response. However, the antibodies generated by consuming gluten do cross react with oat protein (avenin). You need to wait until the disease has gone into remission to find out whether you react to oats.

Edited August 26, 2024 by Russ H

[olioil]

Thank you Russ and also everyone else in the thread! I'll definitely cut out oats, and I'll be patient when waiting for symptoms to subside.  I read about celiacs feeling better "immediately" which scared me that I was doing something wrong, but it makes me feel a lot better that it takes a while for everything to calm down. I'll take oats out and be cautious about cross contact while trying to heal.  Seriously appreciate the advice from everyone.

[Russ H]

3 minutes ago, olioil said:

Thank you Russ and also everyone else in the thread! I'll definitely cut out oats, and I'll be patient when waiting for symptoms to subside.  I read about celiacs feeling better "immediately" which scared me that I was doing something wrong, but it makes me feel a lot better that it takes a while for everything to calm down. I'll take oats out and be cautious about cross contact while trying to heal.  Seriously appreciate the advice from everyone.

I have a diary somewhere but if I recall correctly, I began to notice an improvement after about 2 weeks, but that is a slight improvement. The major one was 3 months in.

I think I had it for at least 45 years prior to diagnosis. I am 3 years in and I think I am still recovering. Most of the recovery was in the first year, by which time I was back on the rails and functional, if a little traumatised by the experience. The dietary restrictions are quite tough practically and socially. Breadth and severity of symptoms vary hugely between individuals.

It is definitely worth taking a good multivitamin for the first year at least as most people on diagnosis have at least one vitamin/mineral deficiency.

[Wheatwacked]

Hello @olioil,

      Once you have removed the gluten from your diet you have started on recovery.  Some people have a withdrawal period for a few weeks.  "In particular, these short peptides showed a morphine-like activity and high affinity for the δ-opioid receptor ... Gluten exorphins (GEs) are a family of small peptides (four/five amino acids) derived from the enzymatic digestion of gluten in the GI tract exerted by pancreatic elastase. These peptides, described as agonist of opioid receptors (ORs), were originally identified in 1979 by Zioudrou and colleagues... Recently, it has been proposed that GEs could play a key role in the onset of the asymptomatic form of celiac disease, by masking the deleterious effects of gluten protein on gastrointestinal lining and function. Gluten Exorphins Promote Cell Proliferation through the Activation of Mitogenic and Pro-Survival Pathways .

  In short, every time you eat gluten, you are dosing yourself with a opiod, numbing the pain.  Onset of opioid withdrawal symptoms 8-24 hours after last use; duration 4-10 days.  

 

[cristiana]

I felt worse before I felt better... it took a while.  Soy containing products hurt my stomach - that took about a year to right itself, and dairy made me feel bloated and very uncomfortable.  (Damaged villi can cause temporary lactose intolerance, once they are healed often dairy no longer causes problems.)  I also found certain foods containing fibre hurt my gut for a while as I healed.  

[Wheatwacked]

     Your next step is to undo the malnutrition.  The damage done to your small intestine villi causes malabsorption and so over the years nutrient difficiencies get worse and those symptoms add another level.

     Unfortunately, western medicine treats symptoms, not cause.

     With gluten gone as the cause, you have to replenish your vitamins and minerals.  It would be nice to take a pill and forget about it, but some of the synthetic vitamins can cause problems.

Folic Acid:  The United States began requiring folic acid fortification of enriched grains in January 1998. The Food and Drug Administration (FDA) required manufacturers to add 140 micrograms of folic acid per 100 grams of cereal grains, breads, flours, corn meals, pastas, and rice to reduce the risk of neural tube defects (NTDs).  While this may help NTD it is not good for men.  

Among the 643 men who were randomly assigned to placebo or supplementation with folic acid, the estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7%  in the folic acid group and 3.3% in the placebo group. In contrast, baseline dietary folate intake and plasma folate in nonmultivitamin users were inversely associated with risk of prostate cancer. Folic Acid and Risk of Prostate Cancer.  I was diagnosed with Benign Prostate Hypertrophy at age 21 and a few months after starting GFD at age 63, it shrank to normal.

So, get your folate from food.

Choline:  90% of westerners do not eat the minimum RDA of choline affects acetycholine (nerve transmission), bile (fat digestion), liver function (it can cause Non Alcoholic Liver Disease), it is essential for mitochondria membranes (A significant portion of the mitochondrial membrane is composed of choline, specifically in the form of phosphatidylcholine (PC), which typically makes up around 40-50% of the total phospholipid mass in most cell membranes, including mitochondria, meaning a large portion of the mitochondria), and Homocysteine, the toxic waste of protein metabolism.  A high homocysteine level can damage the lining of the arteries.  Homocysteine in blood is considered and independent indicator of cardiovascular inflammation. Homocysteine is recycled to methionine by Choline (500 mg RDA), Folate-B9 400 mcg RDA, B12 2.4 mcg, and B6 1.7 mg RDA.  As you can see we need a daily intake of 400 milligrams of Choline, versus less than 2 milligrams of the combined total of folate, B12, and B6.  Unfortunately the best sources of choline are liver, eggs and steak and so we are all deficient since these are advised to be restricted as they may cause high cholesterol.  (Western medicine prefers statins over choline.  Between 2002 and 2018, the average annual cost of statin prescriptions in the United States was $24.5 billion, so you can see why the pharmceutical companies like it.  Overall, the use of statins increased approximately 40-fold between 1991 and 2022.  High cholesterol causes 3.6 million deaths every year.

The safe upper limit for choline is 3500 milligrams a day.  Around the equivelent of 26 eggs a day.  It safe to take choline supplements, I prefer PhosphatidylCholine and will help many of your symptoms, starting with your gut.

I am not advocating throwing away statins if you are on them.  Just increasing you choline intake.  There are no known interactions between choline and any food or medicine. People with low folate levels may need more choline.

 

 

 

[Wheatwacked]

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

[icelandgirl]

Hi Olioil!

I definitely felt worse before feeling better.  I ended up having to do an elimination diet to find out that soy really bothered me and that oats caused a severe reaction as well.  It took me about 6 months to really start feeling pretty good and that was after eliminating the other foods that bothered my digestive system.  

I hope that you start feeling better soon!

[jeema]

One thing you might look into is whether you have SIBO (Small Intestinal Bacterial Overgrowth).  That can cause bloating and it's fairly common in newly diagnosed celiac patients from what my GI doctor told me.  I think I had it when I was diagnosed.  It can be treated with either antibiotics or with probiotics according to Wikipedia: https://en.wikipedia.org/wiki/Small_intestinal_bacterial_overgrowth