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.

[Corinne D.]

Hi Mike, sorry to hear you are struggling. Sometimes celiacs have additional intolerances apart from gluten. In many cases, these intolerances are temporary and resolve once healing has occurred. However, to speed healing and prevent symptoms, it is recommended to eliminate these additional foods and reintroduce them after a while, like six months, to see if they are better tolerated.

Common intolerances can include dairy (even lactose-free), soy, gluten-free grains like corn, quinoa or buckwheat, legumes, sugar, eggs, nightshades... and the examples can go on and on. Everyone is different and can have their own more or less severe intolerances.

To help identify possible intolerances, if you're not doing that already, you could start keeping a food diary, logging everything you eat and your symptoms, to see if any foods can be correlated with how you feel.

Also, you could look into an elimination diet that focuses on whole foods and eliminates processed foods. The Fasano diet for unresponsive celiacs is a good place to start: http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/

Then there is the Specific Carbohydrate Diet, which eliminates all grains and starchy vegetables: http://www.breakingtheviciouscycle.info/

As you may know, it has been used for SIBO in combination with low FODMAPs, notably by Dr. Allison Siebecker: https://www.siboinfo.com/diet.html

SCD is fairly similar to the Paleo diet - there is lots of information about this one, just google it. A quite restrictive, but very effective version of this is the Paleo Autoimmune Protocol: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

I hope this helps.