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Peter D.

Lower right rib pain

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Hi,

I was diagnosed with celiac disease in May of this year and have been on gluten free diet since then. Although antibodies very positive, their values were rather low. Biopsy confirmed Marsh 3a, the diagnosis was celiac disease.

4 months into the diet, the antibodies were negative and my symptoms are still present. I'm still losing weight, have severe lower right ribs pain, back pain, bloody stool (my guess hemohroids), low vitamin D level, achy stomach, mouth sores... 

Does anyone have similar experience? I am starting to doubt celiac disease diagnosis... the docs, however, seem to overlook my problems and do not know what else to do.

Thanks for sharing your experience if it resembles mine.

Peter

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It can take some time to heal. That said just because you have celiac doesn't mean you may not have something else going on. How much bleeding are you having? Just a bit on the tissue is nothing to worry about but if you are seeing actual blood and/or mucus that really needs to be addressed by your doctor.

What is your diet like? Some of us have other intolerances. It is a good idea for us to drop dairy products until you have healed if you haven't already. Going with whole homecooked foods as much as possible is helpful to speed healing. It is a good idea not to risk going our to eat until you have healed. Some restaurants do gluten free well others are very iffy.

If you haven't already do check out the Newbie 101 thread at the top of the Coping section. It has a lot of good info to keep you safe.

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Hello.  In my experience with the people around me, any gluten contamination can cause symptoms to re-appear or continue, and that it takes awhile to eliminate potential sources from one's diet.  This would include contamination of your food by even a crumb of gluten.  To eliminate these risks fully, it is necessary to ensure that one is aware of ingredients that contain gluten; that your kitchen is organized to prevent cross-contamination; that everyone in your household knows how to do this as well (e.g. no dipping their knives back into the butter or jam jar).  Also, for example, never eating packaged items that say "processed on machinery that processes gluten...", and buying gluten-free oats to eliminate wheat contamination. 

Another thing to consider is whether one has developed lactose intolerance as well? 

"The Gluten Dude" has come out with a book about his approach.  

I hope that you and your doctors are able to improve your situation.    

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Have you been checked for Gall bladder problems?  B Complex vitamin deficiencies?  Pernicious Anemia?  Magnesium deficiency?

Keep a food/poop journal in order to see if there are any connections between input and output.

Don't eat processed gluten free foods for a while.  Don't eat in restaurants.  Cut out dairy and nightshades (potatoes, tomatoes, peppers, eggplant) and legumes.  Try the Autoimmune Protocol Paleo diet which has scientifically proven healing results.

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knitty kitty had great advice! How are you feeling now?

yes please try to avoid all processed foods and eat simply.
I am also still healing and sometimes when I feel ok I think ok I can handle fun things like gluten-free falafel mix that is organic and have 4 ingredients and nope I was dead wrong. We will be able to add these things back in to our diets later, but for now, just let your gut choose your food.

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Hi,

Belated thanks for your tips. I went through another series of examinations and as a result my.doc (i changed the doc as he was apparently negligent and not caeingring) is not sure about the celiac disease, she suspects ulcerative colitis (i will have biopsy results in two.weeks) and gall.bladder stones. Next, i will have to gluten myself for 6 weeks to confirm/reject celiac disease diagnosis.

Hope the doc solves it soon...

thank you for the tips again and your support!

Cheers,

Peter

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Hey Peter!

Sorry you have to gluten yourself on purpose, this sucks! Once you are finished these tests, you can start to be really on top of what you are eating and change your life for the better. Also take a look at possible stressors in your life and either react to them differently in a way that works for you or drop them from your life.

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You stated in your first post that you had both positive blood work and a strong positive on your biopsy. Why is your doctor wanting to redo the testing? Being gluten free will not impact testing for other issues and glutening for 6 weeks may not be long enough to produce positive blood antibodies. I would think redoing biopsies to see if your villi have healed is reasonable and retesting for antibodies to make sure those are going down would be more appropriate. Make sure that your new doctor has full copies of your records for past tests and results and carefully consider whether you want to risk excaberating problems with a challenge. Some of us can have severe reactions to a challenge so if you do decide to do one make sure your doctor will get you in immediately if you react very badly.

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Peter D. Ulcerative Colitis is as a result of gluten sensitivity resulting in celiacs disease not a disease randomly on its own. Forget reglutenizing yourself thats just crazy and dangerous for your general health. All your symptoms are common for gluten sensitive/celiac people you just need more help from functional naturopaths and/or doctors trained to understand all this not your run of the mill GP who knows nothing about gluten, diet, etc.Just going gluten free is only one step to recovery. You need to heal your leaky gut which you will have from gluten damage and doing one without the other is counter productive. You will have malabsorption problems resulting in mineral and vitamin deficiencies that need to be addressed to recover, Investigations into what other intolerances you might have plus cross reactive food reactions where your immune system reacts to other foods that it thinks are gluten such as soy and dairy just to name 2, check for other autoimmune problems because when you have one, which celiac disease is, you can develop others from your overactive immune system attacking other body tissues. This is just the start and yes alot to deal with. Your diet needs to go further than just gluten free, grain free also and no Gluten free substitued processed food is important.You would be better off educating yourself alot more through top medical people online and all for free to help you understand and be proactive. Dr Peter Osborne is head of the Gluten free Society in USA and has a wealth of knowledge and experience on the subject including  a gene test he does for anyone world wide called the gluten sensitivity gene test. Other countries and labs do celiac gene testing but only he does gluten sensitivity gene testing which is vital to know because if you have either gene and continue to eat gluten you can develop celiacs disease. If you have the gluten sensitivity gene you can develop over  200 hundred health conditions which includes 100 autoimmune diseases of which celiacs is only one and not necessarily the worst one. Gene testing doesnt lie and you dont need to be eating gluten which is a poison your better off without. Another brilliant Autoimmune diseases doctor who trains other doctors/naturopaths worldwide in understanging autoimmune diseases and the root cause of all of them being inflammation from an overactive immune system is Dr Tom O'Bryan. They both have videos on you tube, do live interviews, podcasts, write papers and books and give so much to the community of people who need help. There are many more experienced practicioners. Just google them. Goodluck.

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I ended up with UC a bit over a year ago, for a while before that I was having that pain, red blood streaks and sometimes globs and mucus in my stools. Certain foods made it worse, for me it was carbs, another person I know has the same trigger and we both treat it with a ketogenic base diet and a herb remedy of marshmallow root, slippery elm and aloe vera (they coat the bleeding and sore areas like a band aid for your GI tract) over the expensive RX that was prescribed. I think I posted my regime in a alternative UC post awhile back.

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2 hours ago, sheronlyn said:

Peter D. Ulcerative Colitis is as a result of gluten sensitivity resulting in celiacs disease not a disease randomly on its own. Forget reglutenizing yourself thats just crazy and dangerous for your general health. All your symptoms are common for gluten sensitive/celiac people you just need more help from functional naturopaths and/or doctors trained to understand all this not your run of the mill GP who knows nothing about gluten, diet, etc.Just going gluten free is only one step to recovery. You need to heal your leaky gut which you will have from gluten damage and doing one without the other is counter productive. You will have malabsorption problems resulting in mineral and vitamin deficiencies that need to be addressed to recover, Investigations into what other intolerances you might have plus cross reactive food reactions where your immune system reacts to other foods that it thinks are gluten such as soy and dairy just to name 2, check for other autoimmune problems because when you have one, which celiac disease is, you can develop others from your overactive immune system attacking other body tissues. This is just the start and yes alot to deal with. Your diet needs to go further than just gluten free, grain free also and no Gluten free substitued processed food is important.You would be better off educating yourself alot more through top medical people online and all for free to help you understand and be proactive. Dr Peter Osborne is head of the Gluten free Society in USA and has a wealth of knowledge and experience on the subject including  a gene test he does for anyone world wide called the gluten sensitivity gene test. Other countries and labs do celiac gene testing but only he does gluten sensitivity gene testing which is vital to know because if you have either gene and continue to eat gluten you can develop celiacs disease. If you have the gluten sensitivity gene you can develop over  200 hundred health conditions which includes 100 autoimmune diseases of which celiacs is only one and not necessarily the worst one. Gene testing doesnt lie and you dont need to be eating gluten which is a poison your better off without. Another brilliant Autoimmune diseases doctor who trains other doctors/naturopaths worldwide in understanging autoimmune diseases and the root cause of all of them being inflammation from an overactive immune system is Dr Tom O'Bryan. They both have videos on you tube, do live interviews, podcasts, write papers and books and give so much to the community of people who need help. There are many more experienced practicioners. Just google them. Goodluck.

Ulcerative Colitis is is recognized as an autoimmune disorder under the umbrella of Inflammatory Bowel Disease which also includes Crohn’s Disease.  UC affects the large intestine (Bowel) and Crohn’s affects the entire intestinal tract from mouth to anus.  

You were correct in that you can have more than one autoimmune disorder at the same time.  

@Peter D. — has Crohn’s been ruled out?  Mouth sores can be attributed to it.  

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Hi all,

Thanks again for the tips and discussion which keeps me hopefull. Today, i got the biopsy and blood test results. I still have postive antibodies and the small intestine has worsened although it looked all.right during the endoscopy. The doc suspects refractory celiac disease and has talked about potential lymphoma... still awaiting response as the doc needed to consult with another expert doc...

Ulcerative colitis and crohn have been ruled out..

 

Thanks for thesharing support,

Peter

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Refractory Celiac Disease is RARE.  Non-celiac savvy doctors are quick to jump to it because the small intestine should heal quickly in theory.  Healing can take more than a year.  Why?  Because the treatment for celiac disease is in the hands of the patients.  Dietary mistakes are made ALL THE TIME.  

Not to mention that the antibodies testing was ONLY developed for helping to diagnose celiac disease.  It was not designed for monitoring celiac disease, but it is the “only tool in the toolbox” we have to do so.  I am proof that you can still have very elevated antibodies and a healed small intestine!  

Check for food intolerances which are common and can explain your symptoms.  

If you have eaten out or have consumed processed food you are at risk of a gluten exposure.  

Your doctor should request that you try the Fasano diet which means no eating out and no processed food for three months first before giving you a refractory celiac disease diagnosis unless the pathologist’s report shows cancer or refractory type 2.  

Here is the study about non-responsive celiac disease and the Fasano diet.  I would strongly recommend (and I am not a doctor) trying the diet before starting a round of chemo or a biologic.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Consider a second opinion or trial the Fasano diet.  

Gallstones or a non-functioning gallbladder was suspected by your GI.  Did you get a HIDA scan to rule that out?  

Edited by cyclinglady

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Cycling lady, thanks, I will try the diet for sure! I do have gallstones which (likely) explain my back pain. I got a little bit worried after I talked to the doc who was not sure about the biopsy and had to consult with another doc... I should have an answer in 2 weeks, in the meantime I will start with the diet right away... big thanks to you and others!

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Cycling lady, thanks, I will try the diet for sure! I do have gallstones which (likely) explain my back pain. I got a little bit worried after I talked to the doc who was not sure about the biopsy and had to consult with another doc... I should have an answer in 2 weeks, in the meantime I will start with the diet right away... big thanks to you and others!

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One more question, when do the antibodies develop? If I accidentally get glutened, do they develop immediately or do they develop only if I am exposed for longer time? How long does it take for them to normalize? Thanks, Peter

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5 hours ago, Peter D. said:

One more question, when do the antibodies develop? If I accidentally get glutened, do they develop immediately or do they develop only if I am exposed for longer time? How long does it take for them to normalize? Thanks, Peter

We are all unique.  No one knows for sure how fast antibodies ramp up.  For some it is within hours and others a few days.  Repeated exposures can be worse.  Once triggered it can takes weeks to stop or months.  Celiac disease is like lupus, Rheumatoid arthritis, Hashimoto’s Thyroiditis or MS except we know the trigger: gluten.  The other AI disorders?  No one knows what triggers them.   Stress, a virus, who knows? So patients have no control, but we do.  In that respect we are lucky. 

Celiac disease is like a chameleon.  Symptoms can change over the years.  

I have personally learned that by getting a gluten exposure, it can trigger other autoimmune issues.  My GI symptoms can last a month or two, but my symptoms from my other AI Disorders can last six months (e.g. autoimmune hives).  No wonder I am very careful with my diet.  The risks are too high.  

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Hi Peter, I have been following this topic with interest and wondered if u had the results of ur tests yet? I’m going through something very similar myself. 

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Hi, not yet, should get the result this week.. but i am 2 weeks into the gluten contamination elimination diet (see useful links from cyclinglady), it was quite painful the first days, but getting used to it.. will keep you posted ;)

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Hi Peter,

Recovery from celiac damage can take quite a while.  I had about 5 years of symptoms before I felt like things settled down.  Some of that was due to other food intolerances that I didn't know I had, and some due to being stubborn and taking too many risks with the gluten-free diet.  Your digestion may never be just like it was before, but it can get a lot better.

Dairy is one intolerance that causes me to have bleeding.  I have problems with other foods like soy, oats, carrots, celery, nightshades, strawberries, etc.  I found out those foods were bad for me by doing an elimination diet.  Actually several elimination diets over the years.  You might want to try that yourself.

Naturemade has a good vitamin D pill.  It may be more effective to take a smaller dose like 1000 units daily than mega doses once a week.

Sometimes peppermint tea is helpful for gas.  Pepto Bismol may help symptoms also.  Although it can turn your stool black.

Edited by GFinDC

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6 hours ago, GFinDC said:

Hi Peter,

Recovery from celiac damage can take quite a while.  I had about 5 years of symptoms before I felt like things settled down.  Some of that was due to other food intolerances that I didn't know I had, and some due to being stubborn and taking too many risks with the gluten-free diet.  Your digestion may never be just like it was before, but it can get a lot better.

Diary is one intolerance that causes me to have bleeding.  I have problems with other foods like soy, oats, carrots, celery, nightshades, strawberries, etc.  I found out those foods were bad for me by doing an elimination diet.  Actually several elimination diets over the years.  You might want to try that yourself.

Naturemade has a good vitamin D pill.  It may be more effective to take a smaller dose like 1000 units daily than mega doses once a week.

Sometimes peppermint tea is helpful for gas.  Pepto Bismol may help symptoms also.  Although it can turn your stool black.

I can not help myself....diary????  and yes, taking the D daily is a better plan, and do not bother with the little green footballs, go the the store and get D3, not D2.

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4 hours ago, frieze said:

I can not help myself....diary????  and yes, taking the D daily is a better plan, and do not bother with the little green footballs, go the the store and get D3, not D2.

Ack!!!   Well, it seems typing is one of the things that causes me issues too! :)

 

 

 

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Peter,

I have been gluten-free over 25 years. As time passed, I started having symptoms of gluten poisoning - not as bad as gluten, but some of the same, old problems. I thought “it’s just me”, because I am extremely careful. This past April, I was diagnosed with another autoimmune disease (count now is three). I started doing research again (on autoimmune diseases) and found a lot of research/information on the subject.

I found the website of Dr. Sarah Ballantyne (see bio here: https://www.thepaleomom.com/about/about-sarah/ ) - she, too, has three autoimmune issues (one is Celiac). Dr B is on the AIP Diet (autoimmune protocol diet) - the diet is an elimination diet - you “eliminate” ANYTHING that could possibly be a problem for anyone with a compromised gastrointestinal system. After a period of time, one can carefully add foods back in to the diet to see if they react to them. 

I have been on the AIP Diet since April, and I feel the best I’ve ever felt in my life! If you have leaky gut syndrome, foods like nightshades can play havoc with your ability to sleep (potatoes, tomatoes, peppers, eggplant). I ate a potato as a test - I was awake most of the night and the rest I had nightmares. Now I sleep like a baby... it’s unbelievable the difference. I’ve removed all grains from my diet - milk and beans, too.

Check out her autoimmune site here: https://www.thepaleomom.com/category/autoimmunity/

I recommend her books.

One more thing - I don’t know if this pertains to you concerning the lower right rib pain, but I had a similar problem. I figured out I have: slipping rib syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1150226/

Take care

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