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Brother Has Celiac, I Was Just Diagnosed With Ibs


reactive

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reactive Newbie

For the past year or so, I've had this intermittent, nagging pain just under my ribcage on the right side. CT scans have all revealed healthy liver, gallbladder, kidneys, etc. Blood tests show normal levels for the major organs. The general surgeon I saw recently said that the pain could likely be Irritable Bowel Syndrome and gave me some samples of Pamine Forte to try, and it does seem to work. However, I'm skeptical about taking medication for a condition that cannot be confirmed.

My half-brother (we share the same mother) has Celiac Disease. I've read up on IBS and have noticed several informational sites claiming that Celiac Disease can often be the real problem when IBS is diagnosed. I've also learned that Celiac Disease is hereditary, and since my brother has it, I've decided to try eating gluten-free to see if that helps with the pain vs. taking pills. I just started today and had bacon & eggs for breakfast, Progresso New England Clam Chowder for lunch and a few Sweet Tart Chews. I suppose I shouldn't expect immediate results, but I am having pain now despite my gluten-free diet today. Does anyone happen to know how long it would take for me to notice results if I maintain a gluten-free diet? I'm not certain if the Sweet Tart Chews are safe; I'm not exactly an expert at recognizing gluten-related ingredients.

Any responses or suggestions would be appreciated.

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eKatherine Rookie

Some people feel better almost immediately, others take weeks or months to feel better. Did you read the ingredients list on the soup? What sort of starch was it thickened with?

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reactive Newbie

I see no mention of wheat on the ingredients list. Modified corn starch is listed as is monosodium glutamate. Did I slip up and eat the wrong thing?

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schuyler Apprentice

I know regular Sweet Tarts are safe (confirmed via e-mail in May), but I'm not positive about the chews. Also Progresso is one of the companies that will list if gluten is used in the product.

I think that it is too soon to expect to see/feel results. The recovery time just depends on how much intestinal damage has been done. Because I had a lot of damage, it was a couple months before my pain went away. Good luck and don't give up!

I see no mention of wheat on the ingredients list. Modified corn starch is listed as is monosodium glutamate. Did I slip up and eat the wrong thing?

A lot of people react to any form of MSG, so that could be your problem. I just looked over the label, and it does not have any gluten in it.

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happygirl Collaborator

before you go completely gluten free, you might want to have your dr run the blood work to diagnose Celiac. If you are gluten free for an extended period of time, the tests will not be accurate. Just a thought!

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key Contributor

It will be harder for you to maintain the diet and take it seriously if you don't have a positive diagnoses. Well, some people can do it. You have to be eating gluten though to be tested. Also if a doctor is well aware of the latest research on celiac disease, he should test you just because you have a blood relative with celiac disease.

Do you have any other symptoms of celiac disease? Some people have no gastrointestinal symptoms at all, but still have it. If you decide to stay gluten free without getting a firm diagnoses it will take more then a day and you have to be really careful about not getting any gluten. REstaurants, etc. Most people have their separate toasters, etc. Stick around here and you will learn alot.

Goodluck and hope you feel better,

Monica

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jenvan Collaborator

It really depends person to person on the diet. Some folks see results only after weeks. It's hard to say. You could also go and get a quick Celiac blood panel done. The one risk of trying the diet is that if you ever want to get tested or go back, the road to returning to gluten is a hard one, if you are a Celiac or gluten intolerant.

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mart Contributor

One day gluten free is not enough to tell if the diet can help you. I say give the diet a try for at least a good 2 months. If you don't feel significantly better, then go back on gluten and get tested. My son has celiac disease, but my husband was diagnosed with IBS and had negative results on the celiac panel. He is on a gluten free diet and has responded very positively. He only feels sick now with gluten cross contamination.

Hope you feel better soon.

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tarnalberry Community Regular

I responded to the diet very quickly, and can even say that one day - heck, one meal - is definitely not enough time. You need to give it - even according to the doctors whom we all thing give WAY WAY WAY too small of a number - a minimum of two weeks. (My reactions to gluten include stomach pains which last 4-7 days.)

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plantime Contributor

A CT Scan does not tell the whole story on the health of your gall bladder. I had to have mine out in 2004, and my daughter is still recovering from having hers out at the beginning of the month. CT scans and xrays showed normal gall bladders for both of us, but a hepatobiliary scan reproduced our pain and nausea, so the gall bladders had to come out. Turns out we both had scarred gall bladders, which is what caused the pain. I learned from the surgeon that scarring like my daughter's can be caused by inflamed intestines, which could be why celiacs are more prone to gall bladder problems.

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love Newbie
For the past year or so, I've had this intermittent, nagging pain just under my ribcage on the right side. CT scans have all revealed healthy liver, gallbladder, kidneys, etc. Blood tests show normal levels for the major organs. The general surgeon I saw recently said that the pain could likely be Irritable Bowel Syndrome and gave me some samples of Pamine Forte to try, and it does seem to work. However, I'm skeptical about taking medication for a condition that cannot be confirmed.

My half-brother (we share the same mother) has Celiac Disease. I've read up on IBS and have noticed several informational sites claiming that Celiac Disease can often be the real problem when IBS is diagnosed. I've also learned that Celiac Disease is hereditary, and since my brother has it, I've decided to try eating gluten-free to see if that helps with the pain vs. taking pills. I just started today and had bacon & eggs for breakfast, Progresso New England Clam Chowder for lunch and a few Sweet Tart Chews. I suppose I shouldn't expect immediate results, but I am having pain now despite my gluten-free diet today. Does anyone happen to know how long it would take for me to notice results if I maintain a gluten-free diet? I'm not certain if the Sweet Tart Chews are safe; I'm not exactly an expert at recognizing gluten-related ingredients.

Any responses or suggestions would be appreciated.

You shouldnt eat Sweet Tarts because i think they have some kinda of starch u need to make sure its gluten free, it will take some time, hey i used to have the same pain u have, and i just found out that i have celiac and H-Pylory, get tested for both of them....

good luck

take care

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    • Scott Adams
      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.
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      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. 
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      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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