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JmomL

Nausea-GERD-Phobia-Anxiety

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Hello Group! Desperate mom here looking for answers regarding my teen daughter. She was diagnosed with celiac 4 years ago. Here is some background: As an infant she suffered with reflux, but seemed to grow out of it. Had a hard time gaining weight her whole childhood, and operated under a higher level of anxiety for years. I would talk with her doctors about her weight, but since she is tall, celiac was never suggested as a possibility. It took me going outside of the system, visiting a holistic dr to find out, not only was she very deficient in certain vitamins, but also had celiac disease! After we eliminated gluten from her diet and replenished her low vitamin levels, we had 3 great years. Her weight became normal for her height, the anxiety seemed to subside. A year ago, seemingly out of nowhere, she started having bouts of nausea and a globus feeling in the throat. School became a very nerve wrecking place for her because of the constant nausea and fear of throwing up. She became picky about what foods to eat, fearing things may contain gluten and cause her to feel sick. We have tried all kinds of antacids (never seems to help), stopping short of ppi, because we've heard horror stories about them... not to mention she suffers from constipation, so not properly digesting her food seemed like an avenue we weren't willing to risk with all of her other issues. She had an endoscope done, that showed no celiac damage, although 3 blood tests showed positive for it... she had been off of gluten for a while before her scope however. Her nausea and worry has turned into panic attacks that wake her up at night. No dr is willing to help us. I feel like we go in to talk to them and they parrot 'take a ppi" and go to therapy. I am all for therapy if it will help, but I know her issues are all part of this nausea/GERD/celiac debacle which need to be addressed. She has been taking herbal anti-anxiety pills that seem to help her relax for a few hours at a time. She has an anti-anxiety RX she is unwilling to try. During school I'm getting contacted by her telling me she is panicking, feels like she is going to throw up. I've picked her up from school countless times. I'm at a loss. She is VERY picky about eating anything she feels will cause her nausea, so she is limiting her food intake, jailing herself into a few 'safe' things she is willing to eat. I make nutritious meals for her, but if she feels sick afterward,  she will refuse to eat it again. The good news is, she loves fruits and vegetables overall and will eat plenty of them. Does anyone else have experience with this type of neurological/emotional reaction to celiac? I recently read an article about CCK amino acid and the possibility that bile is backing up into her stomach causing the nausea- it would explain why the antacids don't seem to work. I'm grasping at straws. http://womenshealthency.com/articles/panic-disorder-and-gastrointestinal-issues/ . She has an appointment coming up with her GI dr that I want to make worthwhile.  I'm looking for advice or any help (without judgement please). Thank you for reading. 

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Hmm my perspective is really quite skewed, my mother made very little attempt to keep the house gluten free and would cause me to get sick constantly. I still to this day do not trust her with my food 6+ years later. Other random incidents have drilled it into and I only trust food I make myself in my own dedicated place. Your daughters is probably at this point, the feeling of how this makes us sick can give a distrust of others with our food sources and make us paranoid about it. Get her some new cookware and let her eat a whole foods only diet like just eggs and simple unseasoned meats, veggies, and fruit. She will have to slowly get out of the hole at her own pace and gain her confidence with foods again.

For her constipation and anxiety some magnesium by Natural Vitality calm might help, just east into so start with 2grams a day then up the standard dose, she might have to dose to tolerance where you up the dose til you get lose stools then back it down 2grams but without any intestinal damage I doubt she would need this.

Since she showed on the blood test then means she is likely getting exposed to it somewhere, eating out, processed foods, and contaminated cookware are common ones, but she could get some CC from say a hair product or lotion (rare but say she touches her skin or hair before handling food and inadvertently eats it). Or if they are in a area where flour might be airborne it can get stuck in the mucus in the nasal passage and throat then drain into the stomach triggering a reaction.  I can only hope this is the case, 10% of celiacs will also react to oats and there is some rare issues of refractory celiac disease.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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3 minutes ago, Ennis_TX said:

Hmm my perspective is really quite skewed, my mother made very little attempt to keep the house gluten free and would cause me to get sick constantly. I still to this day do not trust her with my food 6+ years later. Other random incidents have drilled it into and I only trust food I make myself in my own dedicated place. Your daughters is probably at this point, the feeling of how this makes us sick can give a distrust of others with our food sources and make us paranoid about it. Get her some new cookware and let her eat a whole foods only diet like just eggs and simple unseasoned meats, veggies, and fruit. She will have to slowly get out of the hole at her own pace and gain her confidence with foods again.

For her constipation and anxiety some magnesium by Natural Vitality calm might help, just east into so start with 2grams a day then up the standard dose, she might have to dose to tolerance where you up the dose til you get lose stools then back it down 2grams but without any intestinal damage I doubt she would need this.

Since she showed on the blood test then means she is likely getting exposed to it somewhere, eating out, processed foods, and contaminated cookware are common ones, but she could get some CC from say a hair product or lotion (rare but say she touches her skin or hair before handling food and inadvertently eats it). Or if they are in a area where flour might be airborne it can get stuck in the mucus in the nasal passage and throat then drain into the stomach triggering a reaction.  I can only hope this is the case, 10% of celiacs will also react to oats and there is some rare issues of refractory celiac disease.

Cross contamination is an issue to consider but difficult to achieve in our house of 4 people- only one of us is gluten free. We do our best, even then we could be slipping up somewhere- I didn't even think about airborne gluten! The non-celiac family members eat 'mostly' gluten free now, it's easier that way, but by no means have we eliminated all gluten from the house. Thank you for your response! It's something to look at more closely.

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3 minutes ago, JmomL said:

Cross contamination is an issue to consider but difficult to achieve in our house of 4 people- only one of us is gluten free. We do our best, even then we could be slipping up somewhere- I didn't even think about airborne gluten! The non-celiac family members eat 'mostly' gluten free now, it's easier that way, but by no means have we eliminated all gluten from the house. Thank you for your response! It's something to look at more closely.

I should also mention, those three blood tests were done within a close timeframe of her diagnosis. Her holistic dr performed the first, her regular dr did another to be sure it was all true, and her GI dr did one before her endoscopy. Since then her levels are periodically checked and the levels have improved greatly. 

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Ask the GI to repeat the celiac antibodies blood tests — all of them.  This can help determine if her celiac disease is active.    It sounds like she was positive on the blood tests, but her endoscopy failed to find damage because she had been gluten free.  
 

Once you develop one autoimmune, you can develop more.  It might not even be active celiac disease.  Do not let her get stuck into a celiac disease diagnostic box!  

Look to your kitchen.  Make sure you have safe kitchen practices.  Get her involved.  Does she eat out?   Consume oats?  Consider having the whole house go gluten free as much as possible of the next test shows that her celiac disease is still active.  It does NOT cost more unless you buy gluten-free processed foods and most are junk.  
 

Were you, your husband or the other kids tested for celiac disease?  Celiacs can be asymptomatic.  A new study from Mayo found a 44% chance of people developing celiac disease (even without symptoms) who have first degree relatives with it. 
 

Finally, I agree with Ennis.  Let her be responsible for making her food or overseeing it.  Make sure there is no other physical reasons.  Read this article about Nicole (she is on YouTube) who has celiac disease, but still was still sick.  She had a congenital issue that was finally found, but in the meantime, they all just thought she had a food disorder along with celiac disease.  
 

https://www.allergicliving.com/2017/12/14/celiac-disease-gluten-symptoms-linked-to-eating-disorders-even-anorexia/


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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Do you know more precisely what antibodies were checked for in those three blood tests you mentioned?

Have you looked into SIBO? https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168

Celiac Disease produces dysfunction in the immune system as a result of "leaky gut" syndrome from damage to the small bowel lining. Thus, celiacs tend to develop intolerances/allergies to foods besides gluten that formerly were safe. The leaky gut allows larger than normal protein fractions to pass into the blood stream and the body interprets them as invaders. It is not uncommon for celiacs to be intolerant/allergic to dairy and soy but that certainly is not an exhaustive list.

The advice Ennis gave to simplify your daughter's diet to a few basic, plain items that tend to be safe for most celiacs is good. 

We sympathize with you about your daughter's medical struggles and the challenge of meeting her needs as the only member of a household that has these special dietary needs.

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Yes I misunderstood when you mentioned blood test assuming she had had recent blood work done that still showed high antibody counts, follow up test do need to be done to check if they are going down which seems they have from a follow up comment.

The mentioning of the new food intolerance/sensitivity/allergy issues trent mentioned are really common some of the intolerance and sensitivity issues can go away or lessen with time and healing but a elimination diet is the best way to find them out. Common culprits with celiacs can be dairy, soy, nightshades (tomatoes, potatoes, peppers), garlic, onions, legumes (peanuts, lentils), and corn. These can be checked with a elimination diet for example only eating 2-3 whole foods that are safe for a week with basic salt/pepper seasoning or none at all then removing and adding one new food for a day the checking for changes for 2 days and repeating this cycle. It can be frustrating and long but it is the best way.

It might help if she has her own cooking area, is she old enough and know how to fix basic meals and cook stuff in a pan or in a counter top oven or microwave? It might also be worth mentioning she would need a dedicated sponge to have her cookware washed.  If you want to start off cheap and safe, nordicware makes microwave cookware so she use a microwave to cook her meals away from others where she can control everything, I still keep their grill platters/splatter covers and omelette makers in my kit for leaving home to cook breakfast sausage, bacon, and egg dishes with.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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7 hours ago, JmomL said:

A year ago, seemingly out of nowhere, she started having bouts of nausea and a globus feeling in the throat. School became a very nerve wrecking place for her because of the constant nausea and fear of throwing up. She became picky about what foods to eat, fearing things may contain gluten and cause her to feel sick. We have tried all kinds of antacids (never seems to help), stopping short of ppi, because we've heard horror stories about them... not to mention she suffers from constipation, so not properly digesting her food seemed like an avenue we weren't willing to risk with all of her other issues.

JmomL,

Try taking the Baking Soda test for low stomach acid.

See this Dr. Jockers article that explains it well.

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

Taking some Powdered Stomach Acid AKA Betaine HCL with meals and always with water can help Nausea.

I am helping my brother with these issues now...

This Posterboy blog post might help you as well....

I have written several Posterboy blog posts trying to help other with Low Stomach acid going misdiagnosed...

Here is an "Open Letter" I wrote about it....maybe you will find it helpful Lord wiling.

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

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

Posterboy by the grace of God,

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Here are some ideas/possibilities to investigate:

I would check her vitamins particularly b12. Intrinsic factor is needed in order to absorb vitamin b12, which is made in the intestine. If she has stomach inflammation I don't know if she would be able to absorb b12. There are hypo-allergic vitamins available.  Vitamin b12 deficiency can cause panic attacks and nausea. 

Has she had her blood sugar level tested? 

Inositol may help with panic attacks for some people.

She may have developed an allergic reaction to food. A test for food allergies (by a doctor) is one possible to narrow it down. 

Histamine is a possible cause of Gerd. There is an enzyme that can break down histamine. So I would avoid fermented foods or any foods high in histamine. 

Theanine is an amino acid, which may have mast cell stabilizing properties, and it blocks certain inflammation pathways such as the nf-kb pathway and asthma. It is also promotes healing in the intestine. There some information online of theanine healing stomach inflammation. 

Exercise might help along with avoiding high stress situations. 

Last possibility would be if she has a common stomach bug Helicobacter pylori which could possibly be making things worse. 


Wheat sensitive. Probably Celiac disease but it could be an allergic response. I get very strong anxiety and then autistic symptoms whenever I eat wheat. It is probably a form of encephalitis (swelling in the brain due to wheat) but I am not sure.  Things that I avoid: All grain, alcohol, eggs, dairy, processed food.

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Have you looked at the possibility of IBS? VERY common in coeliacs, common in women, often shows up during late teens and early 20s and is often exacerbated by anxiety - a vicious cycle. Constipation, nausea and acid reflux can all be symptoms and it can be totally debilitating. 
 

Aged 24, I’ve just gone through a stressful period of being checked for other auto-immunes and even bowel cancer as I kept having continued ‘coeliac’ symptoms with no positive antibodies. The eventual diagnosis was IBS, which has been hugely exacerbated by the panic attacks I’ve been having about my symptoms! IBS usually has trigger foods, which are not at all related to celiac - I’ve noticed lactose, caffeine and alcohol are some of mine. Stress also plays a huge factor. 
 

It is usually ruled out by ‘exclusion’ so probably worth suggesting to the doctor as they will often then rule everything else out so they can be sure it’s IBS.

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8 hours ago, Minty said:

Have you looked at the possibility of IBS? VERY common in coeliacs, common in women, often shows up during late teens and early 20s and is often exacerbated by anxiety - a vicious cycle. Constipation, nausea and acid reflux can all be symptoms and it can be totally debilitating. 
 

Aged 24, I’ve just gone through a stressful period of being checked for other auto-immunes and even bowel cancer as I kept having continued ‘coeliac’ symptoms with no positive antibodies. The eventual diagnosis was IBS, which has been hugely exacerbated by the panic attacks I’ve been having about my symptoms! IBS usually has trigger foods, which are not at all related to celiac - I’ve noticed lactose, caffeine and alcohol are some of mine. Stress also plays a huge factor. 
 

It is usually ruled out by ‘exclusion’ so probably worth suggesting to the doctor as they will often then rule everything else out so they can be sure it’s IBS.

Welcome!  
 

When I was much younger, I was diagnosed with IBS.  Told it was due to stress.  But it really was celiac disease all along.  I test positive to only the DGP IgA.  If my doctor had not run the full celiac panel, my diagnosis would have been missed — again.  Bopsies via endoscopy confirmed my diagnosis.  Did you get an endoscopy?  While you might very well have IBS (I Be Stumped), you could like my niece.  Celiac disease was firmly ruled out.  She had scopes and all kinds of tests.  Her 4th GI ordered a pill camera and they found Crohn’s Disease out of reach of both scopes. She did not present with typical Crohn’s symptoms.  
 

I am not trying to dispute your IBS diagnosis, but do not settle if you are still unwell.  There is so much that doctors do not know about the GI tract.  If you are doing well on a gluten free diet and managing your other intolerances, then I am happy for you!  The bottom line is feeling good!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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I got diagnosed with coeliac via endoscopy and bloods when I was much younger, so am confirmed coeliac, gluten free, and all my markers are normal. The IBS is on top of that, which is what I was suggesting might be the case with OPs daughter :) 

Just now, Minty said:

I got diagnosed with coeliac via endoscopy and bloods when I was much younger, so am confirmed coeliac, gluten free, and all my markers are normal. The IBS is on top of that, which is what I was suggesting might be the case with OPs daughter :) 

Just saw the bit about Chron’s. They also ran a new blood test which shows up markers for Chron’s and IBD, and they were clear, plus I also don’t have symptoms which fit either very well, but they do fit IBS perfectly. 

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@Minty

Oh sorry, I misunderstood.  I get so riled up when I hear an IBS diagnosis.  I had a GI send me off for bio-feed back treatments back in the 1980s.    Nice, but it did not solve the root cause of my problem which eventually turned out to be celiac disease.  
 

I had a repeat endoscopy five years after my diagnosis which showed complete healing but revealed autoimmune gastritis.  But when they did the endoscopy, my antibodies were still elevated (the reason I had the repeat endoscopy because I had symptoms and a very elevated DGP IgA).  So, elevated antibodies but no damage (unlike when I was diagnosed). I wonder if you can have negative test results for antibodies yet  still have active celiac disease?    The tests for celiac disease were meant to help diagnose, but not to monitor dietary compliance or healing.  But doctors use them because they are non-evasive.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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