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Looking for GI referral, Proper Diagnosis, & Diet in Houston

Hi!

I've suffered from intermittent inflammation of my left-lower gut for about 5 years now. I've had:
  • Ultrasound came back as negative
  • Many CTs at the ER when inflamed, they came back as "negative"
  • 2 colonoscopies, both "no cancer", but no other diagnosis
Both GI's seemed disinterested once they determined I didn't have colon cancer. Perhaps it's because I never said I had mucus stools, because I don't think I do. Yet I still wonder if I might have Ulcerative Colitis or Crohn's.

In between GI's, I did quite a few rule-outs and finally was able to figure out my worst food triggers:
  • Carrageenan (the very worst pain 20'ish minutes after eating it)
  • Nitrates (moderate pain 1-4 hours after eating it)
  • Annatto (moderate pain 1-4 hours after eating it)
  • Unknown in commercial soups/bouillons (moderate pain 1-4 hours after eating it)
All the above triggers caused burning-pain and inflammation that worsened over time, and the ONLY true relief was to sleep, which is near-impossible without taking a few tramadols (have to spread out the doses, as it makes me nauseated, so I have to take Phenergan suppositories with it to prevent throwing up my pain pills).

After reading about my main trigger Carrageenan being used to induce inflammation in lab tests, I wondered if I might have leaky gut and brought it up to my GP (DO). She had recently attended a leaky gut seminar, so she advised me to eat a very restricted low carb (no sugar, starch, gluten/grain) diet, which went nicely with my insulin-resistant diagnosis (fasting sugars have been normal, but all post-prandials were high — I'm on 500mg Metformin ER with biggest meal except on fasting days due to "IBS").

Between avoiding food additives, and the new restricted diet, the amount of "IBS" attacks initially decreased for a while, but I've been getting more "IBS" attacks lately, even if I'm avoiding triggers and high-carbs/grains.

GP/DO also wanted me to get another procedure, but also with the oral-scoping because "it's more thorough", but I don't want to go through all that yet again if it's going to be with another GI that just wants a medically-justified paycheck to rule-out cancer, then lose interest.

I found the Recommended Drs listed here, and found one that's sort of close to me, but anyone living in a MAJOR city knows what it's like to travel across town in traffic. Does anyone from the HOUSTON area know of a good GI to diagnose/rule out IBDs in the south part of Houston (or Clear Lake, Pearland, Pasadena)? If not, I'll setup an appointment with Dr. Cole T. Thomson, as he's the closest of the Houston drs with written recommendations from this forum.

I'm hoping that with a proper diagnosis, there might be more treatment options, or a better diet (although I'm grateful to at least found a GP that's somewhat knowledgeable with nutritional therapy, because it did decrease the attacks somewhat!)

Thanks so much!

ETA: Forgot to add that I rarely have D, mostly C due to the inflammation. In fact, if I go a few days with no IBS at all, sometimes they seem normal :eek2:
 

Cat-a-Tonic

Super Moderator
Hi Shreela, welcome to the forum. I see you've already introduced yourself in the Undiagnosed Club too - I'm glad you found us but sorry you had to join us! I hope you can get some answers soon. I'm undiagnosed myself so I know how frustrating and exhausting and seemingly endless it can be.

If I understood correctly, you're inflamed but nothing has shown up on tests? Do you mean that they've seen inflammation on the scopes but nothing specific came back on biopsy? Or that they didn't see any inflammation when they scoped you, but you've got palpable/visible/warm inflammation in your abdomen that you can see/feel? If it's the latter, has anyone mentioned the possibility of Behcet's? You may want to read through this thread - this girl had similar symptoms for years (including palpable, warm inflammation on the left side), and she finally recently got diagnosed with Behcet's. It's rare, but it's possible and worth investigating.
http://www.crohnsforum.com/showthread.php?t=44354

I don't have any personal recommendations for doctors in your area, but you may want to check out our doctor directory. Here's the page for Texas:
http://www.crohnsforum.com/doctor/us/tx/

I hope that helped. Welcome to the forum! :)
 
Hi Cat-a-Tonic, thanks, nice to meet you! I checked Behcets symptoms and don't have the other symptoms, don't get bumps after blood draws (assuming that's the same kind of jab in their test), I'm probably 90% caucasian, and considerably older than the average onset age. But thanks, because it was worth looking into :)

None of the Drs have ever mentioned inflammation. It's me that notices it, both by how it feels inside, as well as me being quite distended — the severe "IBS" attacks I got before figuring out a few triggers, I looked 8 months pregnant (granted my stomach's not normally flat, but my pooch looks like a normal bit of padding for someone my size+weight). I ought to tape measure next time I get an IBS, then measure again once it resolves, then give that to the Dr.

The burning pain area is always the same spot. My worst pain scale would be a steady 8 with intermittent 9s (moaning, writhing). But since removing triggers, grains/gluten, I'd rate the worst pains as 6/7 until 2 tramadols+2 phenergans, then rate as 5. I worked 6 years in post-op, I'd never rate my pain as 10 unless I was yelling in agony, but those years taught me many patients go straight for 9-10 while calmly sitting in bed with a relaxed face, hence my blathering on :ybatty:

Even if it's not either IBD, at least having a GI inclined to investigating further would be helpful IMO. Thanks again!
 

Cat-a-Tonic

Super Moderator
Ah, I see. That sounds somewhat similar to what I have going on - I get the vaguely pregnant-looking belly too. I'm not sure if it's bloat, undigested food, water retention, inflammation, all of the above? My stomach starts out relatively flat in the morning and gradually puffs out more and more as the day goes on. Some days it's worse than others, some days I can tell I'm making it worse by eating something I shouldn't, etc. But most days, I have no idea what's causing it. It happened even during the 2 years I was in remission. So, I have no idea why that happens, but I can commiserate.

Do you get any other symptoms, such as eye issues, joint pains, skin rashes, migraines, etc? I've heard others in the Undiagnosed Club say that they've seen rheumatologists for their joint & other issues, and the rheumy docs end up often being as helpful or more helpful than their GIs. Just a thought for you if the new GI doesn't work out. Do you have a good primary care doc?
 
After one of my really bad attacks, I did get an arthritis attack after the IBS started resolving on day 2 - the arthritis was bad for 1 day, unpleasant on the 2nd day, barely unpleasant but still noticeable on day 3, gone by day 4. I haven't had any arthritis at all since then, approx 3 yrs ago. That's approx the time I figured out my main IBS triggers.

No to rashes, eyes have been far-sighted for decades, near-sighted since reaching middle-age, that's about it on the eyes. Headaches eased considerably after cold-turkey'ing addictive Diet Coke many years ago, although I still suffer spring/fall sinus problems, which seems common on the US Gulf Coast.

I inherited my Dr from her partner, who's been on a mysterious leave of absence for over 2 years. I was used to being able to talk him into just about anything that wasn't entirely crazy, but she's not as easy for me to "manipulate" LOL. And she's not as lab-crazy as he was, so I couldn't get a Mannitol/Lactulose test to rule-out Leaky Gut. But she does listen intensely, and seems big on diet to control conditions affected by SAD, based on her teachings of both my gut issues, and insulin-resistance. So I'm pretty sure I'll stick with her, unless my former MD reappears.

She's the one that wanted a upper/lower GI scope, but I didn't ask her for a recommendation, because I don't really trust drs to not recommend their buddies, regardless of talent and lack of.

Next step would be to ask my Facebook, but I'll have to re-study their selective posting again, since FB does major changes every 3-4 months. I know this sounds silly, but if I don't block a post from family, it'll soon get back to my worry-wort mother :redface: — who I don't share medical problems until I get a definite answer.
 
Hi, Shreela,
I'm in South Houston. I have been suffering from a Leaky Gut for over 2 years now and I'm about to start the GAPS diet. There's a great doctor in Houston called Dr. Manso from the Whole Health Center. He's done miracles for my son and me. You can see on his website that he deals with many diseases and conditions, including Crohn's. He's not cheap and he doesn't take insurance, but it was worth is to me. I took my son off 6 meds and thanks to him now he is thriving. He helped me diagnose my condition and my gluten allergy, too. I definitely think he's worth a try.

Another source I rely on heavily is Chris Kresser (online). Another is Weston A. Price and the book Nourishing Traditions.

It sounds like you've suffered a lot and I hope things will improve for the both of us in the near future!
 
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