Extreme bloating even gluten-free

[hilly]

I was diagnosed in April. I have been very careful about being gluten-free, except for one accident in August where I ate candy with wheat. Despite being careful, I still experience extreme painful bloating almost daily. I'm so frustrated. I stopped eating gluten-free oats because I wondered if that was it. Now I am wondering if is dairy. I'm already tired of constantly wondering if I messed up.

[trents]

Some studies, with admittedly small sample sizes, show that about 50% of celiacs react to the protein casein in dairy the same way they do gluten.

Can't find the NIH article I'm looking for but this one basically makes the point: 

 

[Schellee94]

I'm having the same issues. Many things are causing extreme bloat. I'm dairy-free gluten-free and I also have to avoid sugar, quinoa, millet, teff, buckwheat, nightshades, alfalfa, all grasses, and chia hurts my joints. Canned garbanzo hurts me. Most beans hurt me. If I make lentils I soak and rinse several times and that makes them edible for me. I seem to be avoiding fresh garlic and onion as well fresh onion gives me a headache. I'm ok on corn, but not most soy. Rice is sort of ok. Then gluten free oats are ok if raw (not cooked, overnight oats are a good choice) . The list keeps growing and so does the bloat. I'm the same weight I was 2 years ago and much bigger in my arms and my belly and back. I'm looking at trying Dr Hyman's cleanse suggestions, and having a good amount of steamed cruciferous vegetables, as a mainstay for awhile. But it's pretty pricey for organic.

I've been making my own bone broth but I cook it a lot longer so that I can get nutrients out of the bones not just the meat. This broth has helped me tremendously even though I would prefer not to have much meat it seems I really need it right now. I cannot eat pork it makes me feel poorly and I can't eat very much red meat for the same reason. If the eggs are raised properly I can eat the yolks and only sometimes eat the whites. 

I hope this is helpful to highlight some triggers you might be experiencing yourself. There are some other posts here on the forum that highlight digestive enzymes and clean probiotics, as well as lectins. I'm going to look into that.

[Julie F.]

I have dealt with celiac disease for over 22 years. I was then positively diagnosed with a blood test. I was pregnant with my second child at the time. I eliminated wheat (barley, spelt, etc..) from my diet and as a side benefit, I noticed that the psoriasis on my ankles, elbows and knees had gone away after about a year. I made the connection that eating wheat had been causing my skin problems as well as abdominal issues.

Turns out that they are both autoimmune diseases of which inflammation is a symptom. I also deal with dupuytren’s contracture. Not sure if there is a relationship there… am studying that one.

Flash forward to near present time and menopause, my psoriasis was coming back even though I was careful in avoiding gluten. I did a bit of research and found new information on the relationship of gut health and autoimmune disorders. 
Understanding that my symptoms were somehow food related, I decided to see an ND… Nature Pathic doctor and we did a gut zoom.  This is where they test a sample of your poop to see how healthy your gut biome is.  I was seriously lacking in certain key vitamins, healthy prebiotic factors as well as beneficial bacteria.  I followed an elimination diet and discovered a new sensitivity to corn by-products which I am now avoiding and I follow a regime of supplements and healthy diet (eating a rainbow of vegetables and organic if possible) to help me have a healthier gut biome. The psoriasis is reducing in size and I am feeling better.

I am thinking that a gut zoom would be one of the first places to start for anyone dealing with celiac disease… it took me twenty years to figure it out. 

I personally believe that factors contributing to my autoimmune issues are due mostly to what I was exposed to. My parents were heavy smokers and I was continually on antibiotics as a child because of ear, nose and throat infections. Antibiotics destroy a healthy gut environment. There is also information indicating that herbicides with glyphosate… that most US farmers use at harvest time (wheat, corn, soy, potatoes…) can be detrimental to gut health as well.  
Interestingly, we inherit our own gut health from our mother’s womb before we are even born.  Is this part of the source of our genetic disposition for celiac and possibly other inflammatory diseases? I think that increasingly, more research will be done as medical professionals are making connections to gut health and immunity diseases… reading medical research papers has been challenging, but very helpful. I suggest using credible medical research papers and professional and government agencies when studying up on this relationship, don’t just take my word for it, but I did find the results from my gut zoom to be an invaluable resource.

[Wheatwacked]

Welcome hilly and Schellee94, and JulieF.

     There is more to recovering from Celiac Disease than simply not eating wheat, barley, rye products.

Ceilac malabsorption syndrome causes us to not absorb the nutrients we eat, so we imperceptively slip into malnutrition.   Children recover quickly.  Adults can take years because of unidentified vitamin and mineral deficiencies.  Top of the list is vitamin D, then Thiamine, then Choline, and Iodine.

I, too, like Dr. Hyman.  Also Dr Davis (Wheatbelly) and Dr Amen.  While promoting gluten free, they are not dealing with the level of deficiencies brought on by the autoimmune malnutrition that comes with celiac disease.  You do not need a cleaning, Celiac has done that for you.  You do need agressive vitamin and mineral replenishment.  Those promoting cleanses do not take into account the malabsorption /malnutrition of celiac disease.   It will make you worse.  Your gut biome is changing and without the opiod effects of gluten you are not being numbed.  But you are not getting the vitamin and minerals you need to heal.  It is way higher than the mininmum RDA.  That is the amount it takes for 98% of the HEALTHY population to not show signs of deficiencies.  Good for food service meal plans to keep costs in check.  Healing takes more than sufficient.

These are the vitamins and minerals I have taken.  At this point I daily take vitamin D, Iodine and thiamin.  Choline I bounce between phosphatidyl choline capsules and when my anorexia allows lots of eggs and beef.

Try supplementing vitamin D, Choline, Thiamine and Iodine, while also ensuring vitamin B2,3, 5, and 12 intake.  Get your folate from food, not folic acid.

Reducing homocysteine (cardiovascular inflammation) uses a DV of 500,000 micrograms of Choline, versus only 2.4 micrograms of B12,  400 micrograms of Folate and 1,700 micrograms of B6.

 Avoid all processed food until you heal. Gluten Free included.  Eat the foods we ate before TV Dinners.

Use sugar or fruit for sweetness, not High Fructose Corn Syrup.  Sugar breaks into glucose straight to the mitochodria to create ATP energy.  No glucose = no energy.  Everything else has to be processed by and overwhelmed malfunctioning digestive system of Celiac Disease.  

Since 1970 in the US we have switched to HFCS, )even Schwepp's Ginger Ale), took idodine out of dough conditioner, adopted the modern wheat and limited eggs and meats.  In return, 50% of the US are obese vs. 17% in 1970.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

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.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

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.

 

 

Edited September 20 by Wheatwacked

[Wheatwacked]

[cristiana]

@hilly

Sorry as this is a blind post as I have a lot to do today and haven't read the entire thread. 

But I had bad bloating for a while, and at my gastroenterologist's suggestion after a three week trial of going entirely dairy free  I found relief.   I reintroduced dairy gradually and am pretty much OK with it now.

 I also found heavy iron supplementation added greatly to bloating.  For me, bloating gets to me either in my lower gut or in my stomach and upper back, and I once thought I might be having a heart attack the pressure was so immense.  I then remembered I'd taken some iron that morning.   If you are on iron, you may wish to try a different supplement. 

My GP put me onto much more gentle iron fumarate tablets at one point,  suggesting I took them an hour before breakfast, with water, and that really helped.

Also, take a look at the low FODMAP diet.  Although intended for sufferers of IBS, it suggests foods that can help lessen bloating.

Edited September 20 by cristiana

[Wheatwacked]

If you are looking for a good diet to follow to start your real recovery Dr Fuhrman's Eat to Live, 6 Week Plan is a good choice.

Dr. Fuhrman’s 6-Week Nutritarian Diet Quick Start

Dr Fuhrman is a Cardiologist who began the Nutritarian diet.  Helped me immensely with understanding nutrition.  Adapt it to GFD.

If you can find them Drs Fuhrman, Amen, Davis and Hyman all had recurring annual specials on South Florida Public Service TV.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal, although some people may need to permanently eliminate certain foods. The two main ones to eliminate would be dairy/casein and oats.

 

[Schellee94]

Thank you, to everyone who posted here. I am touched, and edified. I am grateful for your in depth and extremely helpful posts, and I am grateful for this forum.  This has generated a pivot point.. thank you, again 🥹 💛💛💛 thank you

[cristiana]

Hi @Schellee94,  it is good to know that you have found this a helpful thread.  Do let us know how you get on!

Cristiana