Still sick months after diagnosis - SIBO and EOE

[mikemcm22]

I am posting the following to see if anyone has a similar story. I am hoping that maybe someone does and is further along in treatment than I am and can give advice. 

I am a 25 year old male. I have been struggling stomach issues for years now. After 5 gastrologists told me it was GERD and definitely not food related I finally tested positive for celiac's disease. This year I was diagnosed with SIBO (Hydrogen dominant), Celiac's disease, and Eosinophilic Esophagitis. I was told the SIBO was probably caused by the celiac. My current symptoms are daily mild to extreme bloating, bowel cramping, mild pain in the lower left abdomen, anxiety (usually when stomached acts up), brain fog, and fatigue. I also have a lot of structural issues... bad lower back, Achilles tendinitis that won't heal, hamstring issues, and all my joints snap and crack. These issues severely limit my workouts but I still workout 4-6 times a week doing anything I can. The only thing I take is omeprozole (25 mg daily) for the Eosinophilic Esophagitis (EoE). I am working with an allergist to identify the food (hopefully it is a food) that causes this but it is mild and not a huge issue at the moment. I guess people with EOE usually have crazy symptoms and I do not. I just started with a nutritionist who thinks I probably have some major vitamin deficiencies. I have been gluten free for just over 4 months, and to my dismay not much has changed in terms of symptoms. I think I may have a little more energy but honestly I have not noticed much difference overall. I think this is due to the SIBO but I do not know. I know I need to try to get my gastro. to fix this. I have been on 3 rounds of antibiotics in the past (pre-celiac diagnosis) with no success. My diet is as perfect as it can get. My nutritionist told me that she honestly could not improve it that much, just help with vitamin deficiency identification. Most days I have pea or rice protein mixed with flax with some pumpkin seeds. Lunch and dinner consist of mostly vegetables, meats, and some carbs (mostly quionia, rice). I cannot go near any type of fruit as it bloats me like crazy, yet other fructans are okay. (I've done Low fodmap diet numerous times with no real luck.) All I know is that if I eat garlic or onion I will get crazy heartburn, If I avoid those then I never get it. I maintain as super strict diet and I think it makes me feel 10% better, but the effort is barley worth the reward. I need more improvement badly as this has significantly impacted my life for years now. I know I'm closer to the finish line now that I have a diagnosis. Everyone tells me it takes time but I feel like I need to be on the right path for that to happen.

If anyone has a similar story and has gotten better please tell me how you were able to. I am especially interested in the SIBO - Celiac connection as I think this is my main issue. 

 

[Ennis-TX]

22 minutes ago, mikemcm22 said:

I am posting the following to see if anyone has a similar story. I am hoping that maybe someone does and is further along in treatment than I am and can give advice. 

I am a 25 year old male. I have been struggling stomach issues for years now. After 5 gastrologists told me it was GERD and definitely not food related I finally tested positive for celiac's disease. This year I was diagnosed with SIBO (Hydrogen dominant), Celiac's disease, and Eosinophilic Esophagitis. I was told the SIBO was probably caused by the celiac. My current symptoms are daily mild to extreme bloating, bowel cramping, mild pain in the lower left abdomen, anxiety (usually when stomached acts up), brain fog, and fatigue. I also have a lot of structural issues... bad lower back, Achilles tendinitis that won't heal, hamstring issues, and all my joints snap and crack. These issues severely limit my workouts but I still workout 4-6 times a week doing anything I can. The only thing I take is omeprozole (25 mg daily) for the Eosinophilic Esophagitis (EoE). I am working with an allergist to identify the food (hopefully it is a food) that causes this but it is mild and not a huge issue at the moment. I guess people with EOE usually have crazy symptoms and I do not. I just started with a nutritionist who thinks I probably have some major vitamin deficiencies. I have been gluten free for just over 4 months, and to my dismay not much has changed in terms of symptoms. I think I may have a little more energy but honestly I have not noticed much difference overall. I think this is due to the SIBO but I do not know. I know I need to try to get my gastro. to fix this. I have been on 3 rounds of antibiotics in the past (pre-celiac diagnosis) with no success. My diet is as perfect as it can get. My nutritionist told me that she honestly could not improve it that much, just help with vitamin deficiency identification. Most days I have pea or rice protein mixed with flax with some pumpkin seeds. Lunch and dinner consist of mostly vegetables, meats, and some carbs (mostly quionia, rice). I cannot go near any type of fruit as it bloats me like crazy, yet other fructans are okay. (I've done Low fodmap diet numerous times with no real luck.) All I know is that if I eat garlic or onion I will get crazy heartburn, If I avoid those then I never get it. I maintain as super strict diet and I think it makes me feel 10% better, but the effort is barley worth the reward. I need more improvement badly as this has significantly impacted my life for years now. I know I'm closer to the finish line now that I have a diagnosis. Everyone tells me it takes time but I feel like I need to be on the right path for that to happen.

If anyone has a similar story and has gotten better please tell me how you were able to. I am especially interested in the SIBO - Celiac connection as I think this is my main issue. 

 

Sounds like many of my issues that I dealt  with after diagnosis. I still have to go easy on garlic and onions (falls under a food sensitivity/intolerance) SIBO sets in on damaged intestines easily, we see it often. You have to mostly starve them, they feed on sugars, starch, carbs in general.  The Keto diet for a month or two should level the playing field a bit. 

Talk with your nutritionist, I had to take high doses of liquid b-vitamins for years with vitamin d,and magnesium. Tapered down to recommended dose now day.

On working out rotate which muscle groups your working on and give rest days for them to recover. 

[cyclinglady]

I am sorry that you have SIBO as well.  Know that it can take a year or longer for most celiacs to heal.  Maybe longer if you are dealing with other illnesses.  You might need to work with your GI to resolve your SIBO, but Ennis has good advice about reducing carbs for now.  I know I felt much better eliminating grains until I healed.  For example, I could not digest corn until I healed.   Not an intolerance, it was just hard to digest.  Think about soft, easy-to digest foods (soups and stews).  

Consider not working out much until you are well.  Give your body a chance to heal.  Sounds awful, but you can do it.  Gentle exercise for now is my advice and I am a pretty active person for my age!  

Like you, garlic and onions are food intolerance that has yet to resolve, despite healing from celiac disease.  I avoid them at all costs.  Identify any food allergies/intolerances.  Keep a food/symptom journal.  

Make sure your medications are gluten free as well as supplements.  I try to avoid all processed foods as much as possible.  I would not use protein powders.  Those are processed and so are supplements.   Consider eating real food.  

Consider the Fasano gluten-free diet for a few months.  It is strict, but it can help to insure that you are really avoiding gluten.  

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

Hang in there!   It just takes time to heal.  

[Mi. Haip]

On 3/23/2020 at 3:03 AM, mikemcm22 said:

I am posting the following to see if anyone has a similar story. I am hoping that maybe someone does and is further along in treatment than I am and can give advice. 

I am a 25 year old male. I have been struggling stomach issues for years now. After 5 gastrologists told me it was GERD and definitely not food related I finally tested positive for celiac's disease. This year I was diagnosed with SIBO (Hydrogen dominant), Celiac's disease, and Eosinophilic Esophagitis. I was told the SIBO was probably caused by the celiac. My current symptoms are daily mild to extreme bloating, bowel cramping, mild pain in the lower left abdomen, anxiety (usually when stomached acts up), brain fog, and fatigue. I also have a lot of structural issues... bad lower back, Achilles tendinitis that won't heal, hamstring issues, and all my joints snap and crack. These issues severely limit my workouts but I still workout 4-6 times a week doing anything I can. The only thing I take is omeprozole (25 mg daily) for the Eosinophilic Esophagitis (EoE). I am working with an allergist to identify the food (hopefully it is a food) that causes this but it is mild and not a huge issue at the moment. I guess people with EOE usually have crazy symptoms and I do not. I just started with a nutritionist who thinks I probably have some major vitamin deficiencies. I have been gluten free for just over 4 months, and to my dismay not much has changed in terms of symptoms. I think I may have a little more energy but honestly I have not noticed much difference overall. I think this is due to the SIBO but I do not know. I know I need to try to get my gastro. to fix this. I have been on 3 rounds of antibiotics in the past (pre-celiac diagnosis) with no success. My diet is as perfect as it can get. My nutritionist told me that she honestly could not improve it that much, just help with vitamin deficiency identification. Most days I have pea or rice protein mixed with flax with some pumpkin seeds. Lunch and dinner consist of mostly vegetables, meats, and some carbs (mostly quionia, rice). I cannot go near any type of fruit as it bloats me like crazy, yet other fructans are okay. (I've done Low fodmap diet numerous times with no real luck.) All I know is that if I eat garlic or onion I will get crazy heartburn, If I avoid those then I never get it. I maintain as super strict diet and I think it makes me feel 10% better, but the effort is barley worth the reward. I need more improvement badly as this has significantly impacted my life for years now. I know I'm closer to the finish line now that I have a diagnosis. Everyone tells me it takes time but I feel like I need to be on the right path for that to happen.

If anyone has a similar story and has gotten better please tell me how you were able to. I am especially interested in the SIBO - Celiac connection as I think this is my main issue. 

 

A bit late to answer here but. I have very similar simptoms... 

I am 34 yo male with many years of Ibs. Since about 2 years i started to have joint pains, crackling joints, tinnitus, anxiety - Somehow food related. I been diagnosed with sibo also unknown cause-maybe the ibs. Also i am trying different diets like low fodmap but none seem to make major differences. I also have alot of undigested starch and a lazy bile. In my case i feel its something to do with the gut brain axis but am not able to figure out what it is. Tried fmt too about a year ago but no real benefit for me. Hope it helps and if i habe any other new info i will post back. 

[Posterboy]

On 10/31/2020 at 11:48 AM, Mi. Haip said:

A bit late to answer here but. I have very similar simptoms... 

I am 34 yo male with many years of Ibs. Since about 2 years i started to have joint pains, crackling joints, tinnitus, anxiety - Somehow food related. I been diagnosed with sibo also unknown cause-maybe the ibs. Also i am trying different diets like low fodmap but none seem to make major differences. I also have alot of undigested starch and a lazy bile. In my case i feel its something to do with the gut brain axis but am not able to figure out what it is. Tried fmt too about a year ago but no real benefit for me. Hope it helps and if i habe any other new info i will post back. 

Mi Haip,

Try taking you a B-complex.  You might be surprised how much better you feel in 3 months.

Here are some links that can help you.

"Riboflavin protects mice against liposaccharide (LPS) induced shock through expression of heat shock protein 25"

https://www.sciencedirect.com/science/article/abs/pii/S0278691510002474

LPS is the toxic product of SIBO that our body reacts too.....

Both B1 and B2 help down regulate LPS.

In/with SIBO you become low in multiple B-Vitamins.

See this Pearl Stats online article on Small Intestinal Bacteria Overgrowth.

https://www.ncbi.nlm.nih.gov/books/NBK546634/

They explain it well...

But I will quote from it for easy reference...from their History and Physical paragraph

Quoting

"The clinical manifestations of small intestinal bacterial overgrowth classically include a combination of abdominal discomfort with bloating, flatulence, or chronic watery diarrhea. Steatorrhea and weight loss from fat malabsorption may manifest as well.[12] SIBO causes vitamin deficiencies. Vitamin B12 deficiency occurs from ileal mucosal damage to cobalamin binding sites. Vitamin B1 and B3 deficiencies occur due to bacterial overutilization. In contrast, bacterial synthesis results in the elevation of folate and vitamin K levels.[13]"

Your EOE can develop from low B3 status Aka Niacin(amide).

Here is research where Esophagus inflammation IE now called EOE was treated with Niacin(amide)

Entitled "Pathological effects of pellagra on the esophagus"......Pellagra is a "Toxic deficiency" of Niacin.

https://www.tandfonline.com/doi/abs/10.1080/01635589009514098

If you want to read more about my story just search Celiac.com for the Posterboy and you will see any number of  threads I have commented on....

Here is the link to my latest Posterboy blog post on Celiac.com

Maybe it will help you!  Be warned It is a little long....but I was trying to be exhaustive....to answer as many questions as any one might have....

I have been reducing my time on the forum to focus on other things in life and to have more time for spiritual issues....

But when I see someone still suffering.....that I could still help.....sometimes I still pop back on...

I would also suggest reading or following things by Knitty Kitty....she believes in Vitamins like me!

Not everybody on this forum does...but some of us do!

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

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

Posterboy by the grace of God,

Here is a great link about how Thiamine is important for treating SIBO.

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

[Wheatwacked]

Here is a list of the vitamins I am taking and am doing well on.  It is based on getting enough of all the essential vitamins up to the minimum RDA while staying well within the safe range, even counting what I get from food. There are nine specific to Celiac, the rest are general population deficiencies. Except vitamin D. If I stop taking 250mcg/day my mood and activity levels suffer. Even 125 mcg/day is not enough for me. Especially make sure you eat foods with lots of potassium, most people don't get enough and diarrhea causes even more loss, compounding the problem. The maximum supplement for potassium is limited to 100 mg/day by the FDA because it causes intestinal lesions. Raising cellular potassium is a long slow process. It has taken me 9 months of over 5000 mg/day to get my systolic blood pressure to drop from 150 to 133.         "Approximately 90% of potassium consumed(60–100 mEq) is lost in the urine, with the other 10% excreted in the stool, and a very small amount lost in sweat. Little is known about the bioavailability of potassium, especially from dietary sources. "Less is understood on how bioavailability may affect health outcomes.  Recommended adequate intakes for potassium were set by the Food and Nutrition Board of the Institute of Medicine at 4700 mg/day [2]. This was largely based on meta-analyses of randomized, controlled trials investigating the effect of potassium supplementation on reducing blood pressure.
"Few Americans meet the recommended intakes; the average intake is 2591 mg/day [3]. This large gap between potassium intakes and recommended intakes led to potassium being called a shortfall nutrient in the Dietary Guidelines for Americans [4]." Nutrients 2016, 8, 444; doi:10.3390/nu8070444.

While this is not medical advice, it covers the nutritional aspects that most doctors say is not their problem, and combined with a gluten free diet has given me a new lease on my life.

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