Can’t figure out why I’m still getting painful bloating

[Marissa221]

I’ve cut out all dairy and gluten I make sure everything has the gluten free stamp but I’m still getting symptoms. Like 2 days ago I made tortillas soup made sure everything was safe and my stomach was fine then I have some the next day along with some cap cod chip that are labeled gluten free and sweet Loren sugar cookies also gluten and dairy free and also tried so vegan free butter (countrycrock plant based butter with olive oil & miyokos vegan butter) and I though I would be fine but come 3:00 I start to to get the painful boating, headache and just really tired. I don’t know what to do I’ve cut everything out why am I still getting painful bloating. 

[trents]

Marissa221, welcome to the forum!

Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? How long have you been practicing gluten free eating?

[Marissa221]

7 minutes ago, trents said:

Marissa221, welcome to the forum!

Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? How long have you been practicing gluten free eating?

I have Gluten sensitivity I haven’t got a celiac diagnosis and this is actually pretty new for me I didn’t start having problems until like a few months and I’m having a hard time finding stuff that doesn’t affect me even after making sure it’s gluten free and dairy free . I can’t get past day 2 without getting really painful bloating for hours headache’s and tiredness. I’ve started to dread having to eat. I don’t know what do?

[Wheatwacked]

What @trents said.

Inulin soluable fiber finally helped my bloating and bowel movements.

I eat mostly plain canned vegetables that I rinse. Carrots, potato, peas, string beans, corn, beets. Publix prepackage Deli roast turkey, ham and chicken breast is good. For while you heal stay completely away from baked goods, gluten free or not. Vitamins are ignored but essential to your recovery.

10,000 IU vitamin D, 500 mg B1, 3, 5, 1000 mg B12, B complex, 1000 mg choline, and any others that you don't eat enough of. Malnutrition is common.

 

[Marissa221]

12 minutes ago, Wheatwacked said:

What @trents said.

Inulin soluable fiber finally helped my bloating and bowel movements.

I eat mostly plain canned vegetables that I rinse. Carrots, potato, peas, string beans, corn, beets. Publix prepackage Deli roast turkey, ham and chicken breast is good. For while you heal stay completely away from baked goods, gluten free or not. Vitamins are ignored but essential to your recovery.

10,000 IU vitamin D, 500 mg B1, 3, 5, 1000 mg B12, B complex, 1000 mg choline, and any others that you don't eat enough of. Malnutrition is common.

 

What brand do you use for your Inulin soluable fiber?

[trents]

Marissa, have you actually been tested for celiac disease or are you assuming you don't have it but have gluten sensitivity instead?

There are specific antibody tests that can be used to diagnose celiac disease. Before one can arrive at a diagnosis of NCGS, celiac disease must first be ruled out. They share many of the same symptoms but there presently no tests for NCGS.

[Marissa221]

20 minutes ago, trents said:

Marissa, have you actually been tested for celiac disease or are you assuming you don't have it but have gluten sensitivity instead?

There are specific antibody tests that can be used to diagnose celiac disease. Before one can arrive at a diagnosis of NCGS, celiac disease must first be ruled out. They share many of the same symptoms but there presently no tests for NCGS.

No I haven’t been test I don’t have the money or health insurance right now to be able to do that.  Does it matter to get the diagnosis if they are both so similar would what I do to get healthy be so different if I have NCGS or celiac diagnosis?

[trents]

The solution is the same for both celiac disease and NCGS. Namely, total avoidance of gluten. However, some people need an official diagnosis in order to keep to their gluten free diet and not rationalize ways to cheat. Also, in certain situations, like congregate care, an official dx may be necessary to make the case with the kitchen staff that you really do need a special diet.

But have you considered that you may have other food intolerances in addition to gluten that are causing these problems? There are ingredients commonly found in gluten free processed foods that just don't agree with people. An example is xanthan gum. And some non gluten foods like gluten free oats and dairy are common offenders for those with gluten disorders.

In addition to that, if you are in the super sensitive class of celiac\NCGS folks, even foods that technically meet the requirements for using the gluten free label (20 ppm of gluten or less) will have enough gluten to trigger a reaction. A better label than "Gluten Free" to look for is "Certified Gluten Free" which requires a stricter standard, 5-10 ppm of gluten. In addition, it is no secret that there are instances of companies using the gluten free label that aren't using it legitimately.

[Marissa221]

Okay thank you this actually helps a lot I’ve been trying to figure out what triggered me yesterday and I’m thinking it’s the gluten free cookies that has oat flour in them. I’ll start looking for the certified gluten label. 
I’ve already taken out all dairy but was wondering if the vegan butter would be safe to use and if you have any recommendations for butter substitutes 

[trents]

No, I don't have any recommendations about butter substitutes. I don't use them. I don't seem to have a problem with dairy. I wish you well as you seek to identify foods that may be causing problems in addition to gluten.

[Scott Adams]

This butter substitute does not have gluten ingredients, and is olive oil based:

https://www.safeway.com/shop/product-details.960011930.html

[Marissa221]

3 minutes ago, Scott Adams said:

This butter substitute does not have gluten ingredients, and is olive oil based:

https://www.safeway.com/shop/product-details.960011930.html

Thank you I’ll check that out

[Marissa221]

30 minutes ago, trents said:

No, I don't have any recommendations about butter substitutes. I don't use them. I don't seem to have a problem with dairy. I wish you well as you seek to identify foods that may be causing problems in addition to gluten.

Thanks talking to you has helped a lot and has made me feel a little better about everything. If you have any else that might help I’d be really grateful. I know fruits and veg are all okay to eat but are there some that are the best to eat that will help my stomach the most

[trents]

You might also research SIBO (Small Intestinal Bacterial Overgrowth). The symptoms you describe are found with SIBO and SIBO is common among those with gluten issues.

[Wheatwacked]

2 hours ago, Marissa221 said:

brand do you use for your Inulin soluable fiber?

The Vitamin Shoppe "Miricle Fiber", or Piping Rock "Inulin"

Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination, 

[Gary Hamilton]

I took xfaxin and got rid of my bloating. But now my limp nodes are hurting in neck. Praying I don’t have cancer. Does anyone else get that with ciliac disease?

[trents]

Gary, I certainly wouldn't be thinking cancer at this point. Viral infections can also cause swollen lymph nodes.

Tell us about yourself. Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? Are you diligently pursuing gluten free eating?

By the way, welcome to the forum!

[Gary Hamilton]

9 hours ago, trents said:

Gary, I certainly wouldn't be thinking cancer at this point. Viral infections can also cause swollen lymph nodes.

Tell us about yourself. Have you been officially diagnosed with either celiac disease or NCGS (Non Celiac Gluten Sensitivity)? Are you diligently pursuing gluten free eating?

By the way, welcome to the forum!

Yes I’ve been on gluten free for 3 weeks now. I have the dermatitis herpaformas rash. Gets better than worse. I been bad sick with pains in mostly my upper body. Very weak and shortness of breath. It’s taking all I have to work at this time. My limp nodes have been having pain in most of them. Thank y’all for having me. I’m 58 years old. Got sick like this 4 years ago. Doctors just told me I had some kind of autoimmune disorder. Now it came back with the rash and all. If eat anything with gluten I get sicker and the rash gets worse. Going back to gastroenterologist to have more test. The swollen limp nodes have scared me with night sweats. 

[trents]

1 hour ago, Gary Hamilton said:

Yes I’ve been on gluten free for 3 weeks now. I have the dermatitis herpaformas rash. Gets better than worse. I been bad sick with pains in mostly my upper body. Very weak and shortness of breath. It’s taking all I have to work at this time. My limp nodes have been having pain in most of them. Thank y’all for having me. I’m 58 years old. Got sick like this 4 years ago. Doctors just told me I had some kind of autoimmune disorder. Now it came back with the rash and all. If eat anything with gluten I get sicker and the rash gets worse. Going back to gastroenterologist to have more test. The swollen limp nodes have scared me with night sweats. 

Has the rash been biopsied and confirmed to be DH?

[cristiana]

18 hours ago, Marissa221 said:

Thanks talking to you has helped a lot and has made me feel a little better about everything. If you have any else that might help I’d be really grateful. I know fruits and veg are all okay to eat but are there some that are the best to eat that will help my stomach the most

Sorry to cut in here, I don't mean to interrupt trents and Gary, but I just wanted to say to the OP @Marissa221 that I still get bloating when I get mild gastritis or reflux - the bloating mainly makes me burp a lot.  I try to go onto a reflux diet for a few days and that helps.  Also, I found when I was supplementing iron that made me very bloated - are you taking iron supplements, Marissa?

[knitty kitty]

23 hours ago, Marissa221 said:

I’ve cut out all dairy and gluten I make sure everything has the gluten free stamp but I’m still getting symptoms. Like 2 days ago I made tortillas soup made sure everything was safe and my stomach was fine then I have some the next day along with some cap cod chip that are labeled gluten free and sweet Loren sugar cookies also gluten and dairy free and also tried so vegan free butter (countrycrock plant based butter with olive oil & miyokos vegan butter) and I though I would be fine but come 3:00 I start to to get the painful boating, headache and just really tired. I don’t know what to do I’ve cut everything out why am I still getting painful bloating. 

Welcome to the forum, @Marissa221!

Keeping a food/mood/poo'd journal can help you pinpoint problematic foods.  You also need to look at how much carbohydrates you are eating. 

Eating too many carbohydrates can feed bacteria in the gastrointestinal tract causing them to grow out of the large intestine where they belong and into the small intestine where they don't belong.  These bacteria produce lots of gas as a byproduct of carbohydrate digestion.  Thiamine Vitamin B 1 is needed to turn carbohydrates and fats and proteins into energy for the body.  Thiamine also keeps Small Intestinal Bacterial Overgrowth SIBO in check.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Gluten free facsimile foods are not required to be enriched with vitamins and minerals like their gluten containing counterparts.  Make sure you are getting enough vitamins and minerals by supplementing.  

The Autoimmune Protocol Diet can help starve out the SIBO.  This is how I dealt with mine. 

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

[knitty kitty]

4 hours ago, Gary Hamilton said:

Yes I’ve been on gluten free for 3 weeks now. I have the dermatitis herpaformas rash. Gets better than worse. I been bad sick with pains in mostly my upper body. Very weak and shortness of breath. It’s taking all I have to work at this time. My limp nodes have been having pain in most of them. Thank y’all for having me. I’m 58 years old. Got sick like this 4 years ago. Doctors just told me I had some kind of autoimmune disorder. Now it came back with the rash and all. If eat anything with gluten I get sicker and the rash gets worse. Going back to gastroenterologist to have more test. The swollen limp nodes have scared me with night sweats. 

Welcome to the forum, @Gary Hamilton!

I've had problems with swollen lymph nodes in my neck.  My lymph nodes have shrunk and don't hurt since I started supplementing with high dose Thiamine.  This explains....

http://www.hormonesmatter.com/recurrent-fever-swollen-glands-febrile-lymphadenopathy-thiamine/

 

Shortness of breath (sailors' asthma) and fatigue and weakness are classic symptoms of Thiamine insufficiency/deficiency.  

And more about Thiamine deficiency...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

To improve the DH rash, avoid iodine in table salt (iodized salt) and sea salt, and dairy (high in iodide), as well as seafood and shellfish.  

Niacin (nicotinic acid that causes flushing) can help clear the skin along with Vitamin C.  

Hope this helps! Keep us posted on your progress!

[Wheatwacked]

On 12/2/2022 at 8:55 PM, Gary Hamilton said:

I took xfaxin and got rid of my bloating. But now my limp nodes are hurting in neck. Praying I don’t have cancer. Does anyone else get that with ciliac disease?

. There are more than 200 different symptoms associated with Celiac Disease. Your doctor's background will determine which ones you are misdiagnosed with. Bacteria such as Clostridium, E Coli or certain Streptococcus species are actually thought to be some of the most common contributors to SIBO. Infection can cause swollen lymph nodes.  If it is a viral infection, zinc gluconate lozenges work well. Eat fermented foods to replenish the "good bacteria" now that the xfaxin has knocked down your overall bacteria. Antibiotics kill all bacteria. Avoid foods with vinegar, they taste like fermented but do not have the pre and pro biotics of fermented. Just empty flavor that we've been taught to associate with pickled foods. It only takes a week to make fermented dill pickles but you get the same flavor from only of few hours of quick pickling with vinegar. Much more profit. When I feel an infection coming on, the lymph nodes in my neck get itchy. The zinc helps quickly, coats the mucous membranes and kills the virus. That's why it works well for me with airborne viruses.

 

[LCAnacortes]

I am so sorry you are going through this.  I have had a whole host of issues over the course of my life but only recently tied it to gluten.  I have not been officially diagnosed.  I went gluten free in April and then figured out a few months later that dairy is also a problem for me.  I can eat hard cheeses and some skim milk cheese but everything else gives me a hard time.  I had diarrhea  with dairy.  Gluten made it explosive - and I had a lot of intestinal rumbling, bloating and pain after I ate too as well as rashes in various places.  I started taking supplements and went gluten free and then dairy free too.  The one thing to keep in mind - is don't eat anything in your household that could be contaminated.  Anything where a knife could have touched bread and then touched the product is dangerous.  For me it was relish, butter, mayonaise, jelly, peanut butter, etc. And you can't use the toaster if it has had grain products in it so look to see if you have cross contamination going on.  Chances are, it occurs unless the whole household is gluten free. There are a lot of nuances to learn.  Good luck on your journey.  You have lots of friends here and the moderators are smart, wise people.

[Gary Hamilton]

On 12/3/2022 at 8:49 AM, trents said:

Has the rash been biopsied and confirmed to be DH?

Yes it was biopsied said it was DH