Still having symptoms

[Barbs-]

Since being diagnosed with Celiac Disease and going gluten free 3 years ago, I feel so much better. But I still will have bloating, nausea, urgent diarrhea. It’s just not daily like before. I’ll feel bad maybe 1-4 times a month. I’m pretty meticulous about avoiding gluten. I suspect a food allergy. Do you also have food allergies? Where do I go to get tested? 

[trents]

Welcome to the forum. Barbs_!

Many or most of us who have celaic disease also have food allergies or other food intolerances. It's all part of the immune system dysfunction/leaky gut that goes hand in hand with celiac disease. You might want to get some ALCAT food sensitivity testing done and you might also want to look into SIBO, a common gut malady experienced by celiacs.

Are you still consuming oats and dairy? Also, some ingredients such as xantham gum commonly found in gluten-free processed foods give many of us unhappy tummies. 

[Barbs-]

30 minutes ago, trents said:

Welcome to the forum. Barbs_!

Many or most of us who have celaic disease also have food allergies or other food intolerances. It's all part of the immune system dysfunction/leaky gut that goes hand in hand with celiac disease. You might want to get some ALCAT food sensitivity testing done and you might also want to look into SIBO, a common gut malady experienced by celiacs.

Are you still consuming oats and dairy? Also, some ingredients such as xantham gum commonly found in gluten-free processed foods give many of us unhappy tummies. 

Yes I’m still consuming oats and dairy. I’ll look into getting the ALCAT testing. I’ve never heard of that. Thanks for responding. 

[trents]

 

[Barbs-]

52 minutes ago, trents said:

 

Thank you so much. Do you know if the at- home tests are reliable? Can you recommend one? Or should I go to an allergist? 

[trents]

I cannot answer that question about the reliability of the home test kits. I have had food allergy (and aerosol allergens) via skin prick and serum testing. I can't remember whether the serum allergy test was the ALCAT or something else. It was a long time ago. I had the testing done by allergists and PC physicians as opposed to a home test kit. But what I do remember is that I tested positive for 30+ foods. And I remember thinking to myself, what am I going to eat? I share that to warn you that if you get this kind of testing you may feel overwhelmed by the results. It is important to keep in mind that these tests rank your reactions according to severity. The key is to target the ones that give the most severe reaction for purposes of trial elimination. In other words, if you can't possibly fight every battle, pick the ones most likely to be give the most impact. Also, keep in mind that you always need to compare test results to real world symptoms. There can be false positives. Food allergies often involve very complex immune system pathways that are poorly understood. There is also often a delayed reaction to food allergens such that you may not react to something you ate for 24 hr. One thing that can help pin down food allergen culprits is to keep a food diary for several weeks that will allow you to see patterns between what you eat and how (and when) you react to them.

You might also look into something called "histamine intolerance". It is very common among celiacs due to the damage done to cells that line the bowel that produce DAO (diamine oxidase). DAO breaks down histamines in our body and if there is an insufficient supply of it we easily get histamine overload. Symptoms of this are varied. They range from digestive upset to respiratory distress to hives to migraines/headaches. I am sure I have this affliction and it causes me sinus/nasal congestion and frequent headaches/migraines. I have been taking a DAO supplement for about a week now and my migraines have disappeared. Too early to tell for sure yet, though.

[Barbs-]

56 minutes ago, trents said:

I cannot answer that question about the reliability of the home test kits. I have had food allergy (and aerosol allergens) via skin prick and serum testing. I can't remember whether the serum allergy test was the ALCAT or something else. It was a long time ago. I had the testing done by allergists and PC physicians as opposed to a home test kit. But what I do remember is that I tested positive for 30+ foods. And I remember thinking to myself, what am I going to eat? I share that to warn you that if you get this kind of testing you may feel overwhelmed by the results. It is important to keep in mind that these tests rank your reactions according to severity. The key is to target the ones that give the most severe reaction for purposes of trial elimination. In other words, if you can't possibly fight every battle, pick the ones most likely to be give the most impact. Also, keep in mind that you always need to compare test results to real world symptoms. There can be false positives. Food allergies often involve very complex immune system pathways that are poorly understood. There is also often a delayed reaction to food allergens such that you may not react to something you ate for 24 hr. One thing that can help pin down food allergen culprits is to keep a food diary for several weeks that will allow you to see patterns between what you eat and how (and when) you react to them.

You might also look into something called "histamine intolerance". It is very common among celiacs due to the damage done to cells that line the bowel that produce DAO (diamine oxidase). DAO breaks down histamines in our body and if there is an insufficient supply of it we easily get histamine overload. Symptoms of this are varied. They range from digestive upset to respiratory distress to hives to migraines/headaches. I am sure I have this affliction and it causes me sinus/nasal congestion and frequent headaches/migraines. I have been taking a DAO supplement for about a week now and my migraines have disappeared. Too early to tell for sure yet, though.

Thank you so much for your input!

[Scott Adams]

This article may be helpful:

 

[Barbs-]

2 hours ago, Scott Adams said:

This article may be helpful:

 

Oh my goodness. That’s scary. I’m going to have to get some tests done. Thank you for sharing 

[trents]

Barbs_, as you know by now, having celiac disease is not a simple healthcare problem to address necessarily, especially when it has gone undiagnosed for many years. By that time, celiac disease has typically brought along some other autoimmune buddies and spawned a lot of other associated health issues that will also need attention. Many years of undiagnosed celaic disease is often not successfully addressed simply by eating gluten free. These other secondary conditions many also demand their own course of treatment. But of course, committing to gluten-free eating is the starting point.

Edited August 29, 2022 by trents

[Kinskey Queens]

Celiac disease is a chronic digestive and immune disorder that damages the small intestine. This disease is triggered by eating foods containing gluten. This disease can cause long-term digestive problems and prevent your body from getting all the nutrients it needs.
What are the celiac disease symptoms?
Bloating
Chronic diarrhea.
Constipation.
Gas
Lactose intolerance due to damage to the small intestine.
Loose, greasy, heavy, and foul-smelling stools.
Nausea or vomiting.
Stomach pain.

[Wheatwacked]

On 8/28/2022 at 5:17 AM, Barbs_ said:

I still will have bloating, nausea, urgent diarrhea. It’s just not daily like before.

Some tests that may help. Blood plasma vitamin D. Vitamin D modulates the autoimmune response and also has a great effect on depression and general well being. More research is indicating that the current recommended level of greater than 29 ng/ml the level recommended to avoid rickets and osteomalacia is the bottom of the barrel. The healthy level is closer to 80 ng/ml.

Only 10% of people eating a western diet get enough choline. Although mostly ignored by medicine it is an essential for fat digestion and deficiency can cause gall bladder problems, liver problems, high homocystene. It is needed to make acetylcholine (nerve transmission). 95% of mitrochondrial membrane (where energy is created in the cell) is made of phosphotidyl choline, so we've got brain fog, fat digestion, cell membrane health and vascular inflammation all connected to this essential vitamin that is generally ignored. Folate is supplemented in the US flours and both choline and folate share the resposibility of breaking down homocystein. Homocystein is basically the toxic sludge running in our blood as a byproduct of our metabolism. Deficiency of these two are a prime cause of spinal cord birth defects.  The RDA for choline ranges from 450 mg/day (three large eggs) to 3000 mg/day, though the negative side effect of too much choline, which is low blood pressure and fishy body oder are rarely seen until intake of 7000 mg/day. 10 cups of cooked brocolli a day supplies the minimum RDA (450 mg) of choline.

It used to be understood that the lactase we have as adults comes from the sybiotic effects of lactobaccillus found in salt fermented pickles. The pickle flavor we get in the stores is a result of vinegar pickling. Same flavor but limited nutritional value. It is one of the gut flora killed off by our western diet. So lactose intolerance can often be the symptom of a diet that kills off the beneficial bacteria or antibiotics, not some magical anomoly. Think about it, you were ok with lactose until recently, what changed? Also commercial milk has an omega 6:3 ratio of 5:1 because of the C:16 fatty acid supplementes used to increase milk fat and volume of milk produced. Milk from 100% pasture fed cows is 1:1; organic milk is 3:1 (only 120 days of pasture is required). Omega 6 is considered inflammatory, omega 3 is healing. That's why fish oil can ease pain.

Inulin is a source of soluable fiber that our benificial gut flora love so well. While metamucil is also a soluable fiber, I don't know if they love it as well.

[Posterboy]

On 8/28/2022 at 4:17 AM, Barbs_ said:

Since being diagnosed with Celiac Disease and going gluten free 3 years ago, I feel so much better. But I still will have bloating, nausea, urgent diarrhea. It’s just not daily like before. I’ll feel bad maybe 1-4 times a month. I’m pretty meticulous about avoiding gluten. I suspect a food allergy. Do you also have food allergies? Where do I go to get tested? 

Barbs et al,

You really should consider going Dairy free as well.....if you haven't already.

Casein can trigger an immune reaction in as many as 50 percent of Celiac's.

Here is the research about it entitled "Mucosal reactivity to cow's milk protein in Celiac disease"

https://academic.oup.com/cei/article/147/3/449/6457256

quoting from the summary of their abstract.

"A mucosal inflammatory response similar to that elicited by gluten was produced by Cows Milk protein in about 50% of the patients with coeliac disease (aka Celiac disease in America) Casein, in particular, seems to be involved in this reaction."

This is usually noted in children but can happen in adults as well.

Also consider testing to see if you have low stomach acid going undiagnosed.....using baking soda can test whehter you have low stomach acid.

Explained well in this article.

https://drjockers.com/5-ways-test-stomach-acid-levels/

I have written the most about it because I found I had low stomach acid going undiagnosed that helped me eat much more regulalry and addressed most of the issues you are still complaining about while continue to eat gluten free.

Here is the blog post that most closely explains what could still be happening with you.

Good luck on your continued journey.

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

Posterboy,

[Barbs-]

3 hours ago, Posterboy said:

Barbs et al,

You really should consider going Dairy free as well.....if you haven't already.

Casein can trigger an immune reaction in as many as 50 percent of Celiac's.

Here is the research about it entitled "Mucosal reactivity to cow's milk protein in Celiac disease"

https://academic.oup.com/cei/article/147/3/449/6457256

quoting from the summary of their abstract.

"A mucosal inflammatory response similar to that elicited by gluten was produced by Cows Milk protein in about 50% of the patients with coeliac disease (aka Celiac disease in America) Casein, in particular, seems to be involved in this reaction."

This is usually noted in children but can happen in adults as well.

Also consider testing to see if you have low stomach acid going undiagnosed.....using baking soda can test whehter you have low stomach acid.

Explained well in this article.

https://drjockers.com/5-ways-test-stomach-acid-levels/

I have written the most about it because I found I had low stomach acid going undiagnosed that helped me eat much more regulalry and addressed most of the issues you are still complaining about while continue to eat gluten free.

Here is the blog post that most closely explains what could still be happening with you.

Good luck on your continued journey.

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

Posterboy,

Thank you. I think I’ll try dairy free if it will help.