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Does Anyone Throw Up With Celiac?


Bri's mom

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Oli Rookie

Sorry to hear about this. I too go from hard to soft stool...but I have found that taking probotics seems to even it out somewhat. It puts in the good bacteria your body needs. I give it to my son also. I don't know if this will help but it cant hurt. Silk Soy Milk puts out a good yogurt with probotics in it and its a yummy treat. Just make sure that she chews it about 30 seconds or so, not just swallow it. When you chew it, it makes the acids in your mouth break down the yogurt and there is hardly anything in your mouth when completely chewed then swallowed. Your body will digest better. The first time I heard of this I went "yeh, right". But it does just that. Try it for a week and see if there is a change.

Oli

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KristaleeJane Contributor

I would think that if she is not being glutened by cross contamination, and consuming 0 gluten, there is another issue happening. If you want to be 100% sure that is not the gluten that is making these symptoms appear than I would have her IgA levels tested to see if they have came down and are in a normal level. Depending on how long it has been since she has been diagnosed she may just not be at a normal level yet.

Also is she getting enough fiber? Sometimes this can be hard to find in the foods that we can eat.

I know with me, I definatly was throwing up and very constipated for a while but then it changed to diareaha when I was very sick before I got Diagnosed. In just 3 mths my levels went from 92 to 13. 13 is a normal level and most of my symptoms are gone. I would have her rechecked if you haven't already. So if she is at a normal level now, than you can start to investigate what else could be causing these symptoms

Good luck, she is so young to have to be worrying about all of this, I couldn't imagine. stay strong, and it will get better

:)

Krista

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Bri's mom Apprentice
I would think that if she is not being glutened by cross contamination, and consuming 0 gluten, there is another issue happening. If you want to be 100% sure that is not the gluten that is making these symptoms appear than I would have her IgA levels tested to see if they have came down and are in a normal level. Depending on how long it has been since she has been diagnosed she may just not be at a normal level yet.

Also is she getting enough fiber? Sometimes this can be hard to find in the foods that we can eat.

I know with me, I definatly was throwing up and very constipated for a while but then it changed to diareaha when I was very sick before I got Diagnosed. In just 3 mths my levels went from 92 to 13. 13 is a normal level and most of my symptoms are gone. I would have her rechecked if you haven't already. So if she is at a normal level now, than you can start to investigate what else could be causing these symptoms

Good luck, she is so young to have to be worrying about all of this, I couldn't imagine. stay strong, and it will get better

:)

Krista

Krista,

THANK YOU SO VERY MUCH FOR YOUR ADVICE! Bri has a GI appointment 8/4 and we're making a list of questions for the dr. That's a great idea to have her IgA levels checked again. She has never been tested for lactose intolerance so that could be what's causing all the throwing up. No she is not getting enough fiber, some how high fiber causes problems too. High fiber causes stomach cramps and lots of pain. The Mayo Clinic ruled out Crohn's and IBD, but she still has symptoms that goes with these diseases.

Thanks again for all your help :)

Bri's mom-Sherry

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Bri's mom Apprentice
Sorry to hear about this. I too go from hard to soft stool...but I have found that taking probotics seems to even it out somewhat. It puts in the good bacteria your body needs. I give it to my son also. I don't know if this will help but it cant hurt. Silk Soy Milk puts out a good yogurt with probotics in it and its a yummy treat. Just make sure that she chews it about 30 seconds or so, not just swallow it. When you chew it, it makes the acids in your mouth break down the yogurt and there is hardly anything in your mouth when completely chewed then swallowed. Your body will digest better. The first time I heard of this I went "yeh, right". But it does just that. Try it for a week and see if there is a change.

Oli

Thanks for your help. :)

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  • 2 weeks later...
Bri's mom Apprentice
I'm thinking that if your daughter is throwing up "several times a week and has to take laxatives everyday" then she is either not as gluten free as she is trying to be, or there are other food issues involved. Either way I suggest a very precise and detailed food diary to see if you can pin point the problem because this is definitely NOT healthy! :o How old is your daughter? I hope she feels better soon!

She is 23 yrs. old and has lost a lot of weight. She weighed 145 two years ago and is at 104 now. I just can't figure out why her GI has not tested her for lactose intolerance! She loves cheese and eats it daily. Could that be the problem? Thanks for your help and concern.

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mommida Enthusiast

I hope every thing went well at Bri's appointment. Did they do further testing?

I'm on the vomit/throw up/ sprue posts today because my 6 year old just got out of the hospital Sunday after vomitting blood. She had a viral infection (unknown virus) and the "non-diagnoses" of the whole event "could possibly be" mesenteric adenitis.

So get Bri back to the doctor's office and get some answers before it gets worse!

Laura

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gfp Enthusiast
i when i eat gluten my oesophagus swells up so i can't swallow - i then have to throw up the food thats been stuck in my oesophagus - it's not nice and it really hurts and i end up having panic attacks because i can't beathe. but yeah i have that problem - it may not be the same because you sound like your properly throwing up the contents of your stomach...whereas for me its just the contents of food which is stuck in my oesophagus. xxxxxx

This is a different case I believe.....

Vomiting can be due to many factors but the most controlling is psychological in most cases (excepting this)...

I DO NOT get sea sick (categorically).... hence i don't get sea sick....

If I feel nauseous I refuse to vomit because I stick to my belief. Other people will vomit when they see others vomit... they are perfectly fine (or at least just nauseous) until they see/smell vomit...

I strongly believe that self control can overcome most vomiting..... except for when we truly need to due to poisoning.

This was probably due to me being a macho kid years ago..... then as I got older i just accepted ....I don't get sea sick or air sick... by believing this I manage not to.... if you believe the inverse I believe then you will.

I feel nauseous when I get glutened but I refuse to vomit...

I have however on occasion had the same problem as above and ALLOWING myself to vomit has been the quickest way out.... on these occasions the food is not even digested ... thinking back I think this was my first ever reaction to gluten I remember!!!

The problem is if you think you will ... well you will.

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melmak5 Contributor

This is a great/interesting conversation.

Regurgitating food was my first symptom, which confused many a doctor because they assumed it was something caught or growing in my upper GI and ignored my lower GI symptoms.

When I get glutened I regurgitate food. About a tablespoon or less at a time for about 1-2 weeks. Its gross, but it was amazing when it FINALLY went away and it was like a lightbulb went off and I was like "Ohhhhhhhh it IS all connected!"

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Bri's mom Apprentice
I hope every thing went well at Bri's appointment. Did they do further testing?

I'm on the vomit/throw up/ sprue posts today because my 6 year old just got out of the hospital Sunday after vomitting blood. She had a viral infection (unknown virus) and the "non-diagnoses" of the whole event "could possibly be" mesenteric adenitis.

So get Bri back to the doctor's office and get some answers before it gets worse!

Laura

Oh Laura, thank you so much for remembering Bri's appointment. You will not believe this, but she and I both forgot her appointment on the 4th. She and her fiancee were out of town and I just forgot. Are we crazy or what? She has rescheduled and has a new appointment 8/13. Too bad I didn't have you here to remind us and get Bri back in town it.

What in the world is mesenteric adenitis??? Bri was in the hospital back in Feb. for 13 days with a gastrointestial infection, supposedly, it was days before they finally arrived at the gastrointestinal infection diagnosis. I don't think they really new what was going on. She didn't throw up blood, but she was soooo sick and in so much abdominal pain. It was another scary time in our lives, but we lived through it. They put Bri on a pic-line for 10 of the 13 days, pumping her full of nutrients and IV's with fluids and 2 antibiotic IV's. Tell me more about your 6 year old.

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Bri's mom Apprentice
I'll just add my two cents because I had the same issue and went to my GI doc with it. After showing him my food diary and everything I use for topical products I went for more testing.

I was then diagnosed with Gastroparesis because I was throwing up so often and had constipation.

Does she get full easily or feel like there is something stuck in her throat? Those are the other two indicators I had at least. This was just my experience though.

With the Celiac I just get the diarrhea and nausea if I'm glutenated.

My prayers are with your daughter. I hope this gets figured out soon. Excessive laxative use can make matter worse for that end to wear she'll need them more and more. Please go to the doc.

Sounds like you have things figured out. Maybe Brianna GI will finally do more testing and find out why she has all this throwing up and constipation. Yes she does get full easily. If she eats much at all (which is not much) she immediately throws up. I've tried to get her to eat smaller portions, but she says when she finally gets hungry or finds something safe gluten-free she then eats too much. What is Gastroparesis? I'll have to research this. Thanks for your help.

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Bri's mom Apprentice
This is a different case I believe.....

Vomiting can be due to many factors but the most controlling is psychological in most cases (excepting this)...

I DO NOT get sea sick (categorically).... hence i don't get sea sick....

If I feel nauseous I refuse to vomit because I stick to my belief. Other people will vomit when they see others vomit... they are perfectly fine (or at least just nauseous) until they see/smell vomit...

I strongly believe that self control can overcome most vomiting..... except for when we truly need to due to poisoning.

This was probably due to me being a macho kid years ago..... then as I got older i just accepted ....I don't get sea sick or air sick... by believing this I manage not to.... if you believe the inverse I believe then you will.

I feel nauseous when I get glutened but I refuse to vomit...

I have however on occasion had the same problem as above and ALLOWING myself to vomit has been the quickest way out.... on these occasions the food is not even digested ... thinking back I think this was my first ever reaction to gluten I remember!!!

The problem is if you think you will ... well you will.

I like that, "if you think you will...well you will". My daughter's therapist has told her the same thing. Thanks for your wisdom, you sould like a strong and wise person.

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Jaimepsalm63 Rookie
Sounds like you have things figured out. Maybe Brianna GI will finally do more testing and find out why she has all this throwing up and constipation. Yes she does get full easily. If she eats much at all (which is not much) she immediately throws up. I've tried to get her to eat smaller portions, but she says when she finally gets hungry or finds something safe gluten-free she then eats too much. What is Gastroparesis? I'll have to research this. Thanks for your help.

I have what's called idiopathic gastroparesis. I don't have diabetes which is one of the "known" causes of gastroparesis. Idiopathic means they don't know why I have it.

What it is: the stomach muscles don't work to help digest food and the food sits there for a long, long time. Fiber makes it a lot worse!!!!!!!!!!!!! You can go from loose stools to very hard stools. You get full easily, and then you feel like you're starving and try to eat a lot because you haven't had anything....then you throw up from too much food. Even a little bit of food can make you sick to your stomach.

I guarantee you lose a lot of weight just because you're afraid to eat or you throw up what you tried to eat. It gets worse over time, not better. It can't be controlled with diet or drugs. They are trying to find something to help make the stomach muscles move, but nothing promising has come through yet...that hasn't been pulled from the market for other reasons.

Some medication to control the nausea is a joke! Have them do a gastric study of how fast food gets digested. It's a test that takes about 90 minutes. She will eat an egg that is radioactive and sit on a machine to see how fast the food works itself through. It's worth the pain if you find out that's what she has....it's worth it to rule it out too.

My doctor knows I'm gluten free, I'm now also fiber free. That includes over the counter fiber sources, certain vegetables, certain fruits, legumes, grains of any kind. If I have fiber I will get what's called a bozoars, it's like having a hairball, that has to be surgically removed. Soft foods are "easier" to keep down, but that's no guarantee that it won't come up.

If your daughter does have this, I pray she doesn't, you can contact me and I can help you through it. I went from 145 pounds to 96 and am now back up to 130.

Please don't forget her appt!! If it's as simple as a dairy/lactose issue that is easier to handle than this. If it is gastroparesis (especially idiopathic) it's going to be a life long change and hard to cope with unless you have a support system.

Blessings,

Jaime

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Bri's mom Apprentice
I have what's called idiopathic gastroparesis. I don't have diabetes which is one of the "known" causes of gastroparesis. Idiopathic means they don't know why I have it.

What it is: the stomach muscles don't work to help digest food and the food sits there for a long, long time. Fiber makes it a lot worse!!!!!!!!!!!!! You can go from loose stools to very hard stools. You get full easily, and then you feel like you're starving and try to eat a lot because you haven't had anything....then you throw up from too much food. Even a little bit of food can make you sick to your stomach.

I guarantee you lose a lot of weight just because you're afraid to eat or you throw up what you tried to eat. It gets worse over time, not better. It can't be controlled with diet or drugs. They are trying to find something to help make the stomach muscles move, but nothing promising has come through yet...that hasn't been pulled from the market for other reasons.

Some medication to control the nausea is a joke! Have them do a gastric study of how fast food gets digested. It's a test that takes about 90 minutes. She will eat an egg that is radioactive and sit on a machine to see how fast the food works itself through. It's worth the pain if you find out that's what she has....it's worth it to rule it out too.

My doctor knows I'm gluten free, I'm now also fiber free. That includes over the counter fiber sources, certain vegetables, certain fruits, legumes, grains of any kind. If I have fiber I will get what's called a bozoars, it's like having a hairball, that has to be surgically removed. Soft foods are "easier" to keep down, but that's no guarantee that it won't come up.

If your daughter does have this, I pray she doesn't, you can contact me and I can help you through it. I went from 145 pounds to 96 and am now back up to 130.

Please don't forget her appt!! If it's as simple as a dairy/lactose issue that is easier to handle than this. If it is gastroparesis (especially idiopathic) it's going to be a life long change and hard to cope with unless you have a support system.

Blessings,

Jaime

Thank you Jaime for all you help and concern, but Brianna did have the gastric study done at the Mayo Clinic in Jacksonville, FL 8/07 It came back normal. We were so shocked because she was having all the symptoms you mentioned above. She has told me about times that food had sat in her stomach for hours and then she would finally throw it up and it was like it had not even started to digest. When she had the scrambled radio active eggs and toast, the doctors reported that her stomach emptied normally. Maybe she needs to live on eggs. haha My husband and I will be on vacation this week when she has her next appointment (8/13) and she better get there this time or I'm going to be very upset. She might be 23 years old, but she is still my baby so I made her a list of questions that I want answers to. Retest IgA, lactose test, bone scan, and all the other routine blood work. Her teeth are also becoming brittle, she has a small chip now on one of her front teeth. It has also been a year since she had a bone scan. The last bone scan indicated that she is already in a state of osteopenia.

Thanks again for all you help.

Sherry

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Jaimepsalm63 Rookie

I had the test done twice! The first time the gastric test came back normal. I kept telling my doctor something just wasn't right. He listened and did it again....sure enough he said that I did have gastroparesis. He said it can flare up and then calm itself until it's at the point of just flaring up on a regular basis.

I know it's a pain, but she my need to get another test done, hopefully during what's considered a flare up. Make sure also she follows the prep directions accurately. Even if she brushes her teeth that morning, it will give a signal to the stomach to start working then and there...which can throw the test off. Some people feel horrible for going in with bad breath that they swish with mouthwash, brush their teeth, or suck on a mint. They don't understand that it will make the test invalid.

I had the test 6 month apart and the second test was during a "flare up". Now, I just have that all the time.

Have her talk to the doctor again about it. Remember, she's the one who feels sick all the time. The doctor isn't feeling the pain. Your daughter knows what's going on in the way she's feeling better than any doctor. Don't let any doctor or medical person try and walk all over her. I've had a couple try to do that with me and I told them they aren't the ones throwing up and feeling like garbage. I then fired their buns and looked for a doctor who was willing to listen.

I understand she had this done at the Mayo. To me they are just an expensive doctor's office my insurance didn't pay for and left me with the bill. It was the first test....the second one was done locally and was covered by the insurance. The Mayo didn't even think I had gastroparesis, they thought it was in my head. (I had been complaining for years and I'm sure I had it in my file I was a hypochondriac.)

I never heard of gastroparesis until my doctor told me after the second test that's what he had suspected. He said he was thankful I didn't give up and wanted to get better. It's not right to throw up that many times a week and then become afraid of eating.

I'm a mom of three kiddos, and I've told them no matter what age they are....they will always be my babes!

Sorry about the ramblings! I get angry when I think about how many years I suffered because a few doctors thought I was a crazy woman who needed a therapist and anti depressants when in truth I had a major issue going on with my health.

I do hope you find out soon what's going on.

Jaime

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  • 3 weeks later...
HippyGirl84 Rookie

I am a 24 yr old female and through out my youth and especially in the past 2 yrs leading up to my diagnosis of celiac I threw up all the time, had constant nausea and diarrhea on a DAILY basis. My guess as to why the people in your support group didn't deal with this is because they are not as intensely (outwardly) effected by gluten. I can eat food that is gluten free, but if it is cross contaminated I will be sick for a week or more, while my mother can cheat and take bites of cookie here and there and feel fine....different celiac patients react differently. I have been diagnosed and gluten free/lactose light for a yr, but am still having gas, bloating, malnutrition, nausea, blood sugar issues and fatigue so I am looking into other foods being allergens or things like GASTROPARESIS or some other problem. If non of these other things end up being a problem for your daughter i would maybe look into the vomiting and laxatives as a problem with her relationship with food. I know I struggled with eating disorders growing up and now having severe celiac I sometimes think it's just easier to not eat, or when i think i may have been glutened I am so afraid to go through the agony of getting sick that i have wondered if just throwing up would maybe avoid the agony of sickness. I don't know if any of this helps, but it's hard being young with celiac so i hope your daughter starts to feel better soon!

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April in KC Apprentice

If she also suffers from a lump in her throat or feelings of food being stuck in her esophagus at times, ask them to test her for eosinophilic esophagitis and eosinophilic gastroenteritis. These used to be considered uncommon diseases, but now they are diagnosed more frequently. My son has both Celiac and eosinophilic gastroenteritis. You can find out more at www.apfed.org.

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  • 1 month later...
raen Apprentice

oops, delete.

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raen Apprentice

my brother throws up from celiac easily!

i only did once, that i know of, but it was from wheat crackers. my brother throws up from all sorts of things.. the celiac effected his stomach to the point that he cant even eat watery fruit without having queasiness.

I read it was very common, when i posted a similar thread, and most of all, it seems to be tied to personal mentality. there are people who just prefer throwing up to feeling bad for hours, and then there are people who would feel bad for a week before letting themselves vomit. most people fall in the middle. i really really hate vomit, and my brother can deal with it if hes that nausius.

i can say, at least, it makes most celiacs ive met nauseous at the very least.

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raen Apprentice

oops, delete- very sorry, computer error.

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munkee41182 Explorer

I did for the first time two weeks ago, one margarita and a chimichanga (non gluten-free). Went home walked upstairs and out it came. I said to my fiance - guess I can't cheat once in a while anymore. Been celiac for 6 years - on and off the diet and have been very strict for the past 4 months. Oh well - it was bound to happen!

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  • 1 month later...
The One Apprentice

Before I got diagnosed I would throw up every day several times a day, I always carried plastic bags in the car and still do because when I do get glutened, even the smallest amount, I surely throw up, but not before being bloated to the point where I look pregnant and of course the whole feeling of depression, painfulness everywhere, etc that comes with glutening and I'm sure you all know well. So yes, as for your question it is common to vomit, but not if she's gluten free! if she still throws up then there must be something she is eating that is making her sick, last weekend I got glutened by something that I didnt even see any gluteny ingredients on! Also, take her off dairy if she just started the diet, dairy used to make me sick too after I started the diet, then I found out it was just that, eventually she can add it back.

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  • 7 years later...
Helen U Newbie
On 17 July 2008 at 2:07 PM, Bri's mom said:

My daughter has been diagnosed with celiac disease for 1 1/2 years and has been on a gluten free diet since day one. She of course gets glutened occasionally, but tries her darnest to eat gluten free. After talking to celiacs at our local celiac support group, I found out that no one there has a problem with throwing up and constipation. I was dumb founded! My daughter throws up several times a week and has to take laxatives everyday. IS THIS NORMAL? Please, I need everyone's advise!

I am unsure if I'm posting in the right place as first timer

i vomit until all the gluten is out of my small bowel and I'm pretty constipated

my  18 yr old daughter is constipated and vomitting for 10 weeks

waiting for a colonoscopy and gastroscopy blood test was normal but raised white cells and liver enzymes( dr asked if she drinks alcohol which was pretty funny as she is puritanical about such things)

im so hoping its coeliac disease as no other tests show anything except chronic constipation. Worried about prep and procedure due to her extreme anxiety. But we have to do it. I believe the dx shows up in different ways. I had no symptoms as a teen after I was taken off the diet.

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Helen U Newbie
On 17 July 2008 at 2:07 PM, Bri's mom said:

My daughter has been diagnosed with celiac disease for 1 1/2 years and has been on a gluten free diet since day one. She of course gets glutened occasionally, but tries her darnest to eat gluten free. After talking to celiacs at our local celiac support group, I found out that no one there has a problem with throwing up and constipation. I was dumb founded! My daughter throws up several times a week and has to take laxatives everyday. IS THIS NORMAL? Please, I need everyone's advise!

Are the blood tests to do with raised liver enzymes or white blood cells being raised( my daughter has those)

 

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  • 11 months later...
Chrismark Apprentice

Celiac Disease will react differently with each person.  Some people can throw-Up because of gluten, and some will not.  I suffer from severe bloating and constipation.  Many with Celiac Disease react from Lactose, and that can make them throw-up.  Celiac is an individual disease, and each person is different.

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  • 4 months later...
Audrey’s Mom Rookie

My daughter who is 9 and newly diagnosed went on a secret gluten binge about a month ago.  I had her gluten free cupcakes in a package next to the gluten containing cupcakes.  She decided to test it out and ate 3 or 4 mini gluten filled cupcakes in about 10 minutes.  

She ended up super sick and threw up a few times.  It was a good learning experience for her.  She now turns down cupcakes at parties.   I am Room Mom for her class this year and bring both gluten free and store bought for the class.

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      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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