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-> Health & Wellness
-> Crohn's & Colitis
amother
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 Wed, Mar 08 2023, 4:57 pm
| amother Junglegreen wrote: | No he did not suffer bH. He was symptom free. She did a camera endoscopy every 6 months to see how the ulcer in his ilium was looking. She tried a course of oral very targeted steroids and it worked twice but the ulcer came back. After 2 years it she was ready to call it Crohns and put him on Humira. With Crohns it is very very important to catch it early and treat it properly right at the start. Then the prognosis is excellent with HKBH's help. During those 2 years we tried holistic approach with Aloe pills and then a ton of supplements from Dr. Debbie Altshuler at Integrated Health Solutions. He also went to someone in Bnei Brak who supposedly Rav Chaim recommended. Perhaps the alternative route helps with symptoms but BH my son did not have any. We needed to heal the ulcer.
I liked that the office is Pediatric, I think they are extra sensitive to adolescent life style etc...
I think it's worth going to get a diagnosis from her. "IBS" is not very helpful. And if it is IBD it's best to have it treated asap for best outcome. Hatzlocha! |
Oh wow. BH he didn't have pain.
Who's this Dr Debbie Altshuler and where's she located?
Crohn's was ruled out.
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amother
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Wed, Mar 08 2023, 5:07 pm
| amother Springgreen wrote: | Functional medicine drs are medical doctors with extra training in treating root causes of diseases. It is typically more of a whole body approach, but since the gut is pretty foundational, I'm sure there's plenty to look at just there. For example, they can run specialized stool testing that can look for different strains of bacteria that are either high or low so you can know which strains of probiotics to use, can pick up if there are parasites that mainstream testing will usually miss, can test for yeast overgrowth and other gut infections. They can look for inflammation in the gut, gut based food sensitivities, if there's low stomach acid or low pH that's preventing proper digestion. They can test for any treat bacterial overgrowth, see if there are motility issues etc. Then whatever issues they find, they treat with targeted treatment.
Some of this can be done with mainstream Dr's as well,.you just need to know what kind of testing to ask for, find someone willing to do the testing for you, and knows how to treat and won't just dismiss.
Has your child ever had a full celiac panel done? Complete stool testing? Food allergies and sensitivities? Sibo? H pylori? Yeast? Have you trialed a dairy and gluten free diet?
Dr. Raphael Kellman might be a good place to start. Yes, he'll probably be very pricey 😞 Or dr Keith berkowitz |
How do I know which tests to do with regular Drs? Do these specialized stool tests have names?
They ruled out celiac from the blood test, I believe. Did stool testing; how would I know if it was complete or not? Tested for H pylori. Went to an allergist, no food allergy. I asked for a food sensitivity test, they said there's no such thing... Yes, was on a FODMAP diet, which meant dairy, gluten, and tons of other stuff free in the beginning.
I actually do want to test him for SIBO, to rule it out.
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amother
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Wed, Mar 08 2023, 5:13 pm
| amother OP wrote: | Oh wow. BH he didn't have pain.
Who's this Dr Debbie Altshuler and where's she located?
Crohn's was ruled out. |
How did they definitively rule out Crohns? Did he get a fecal calprotectin level? It's a stool sample that can be a part of IBD diagnosis. A scope (colonoscopy, endoscopy) are used to look for IBD. If he hasn't had this done then IBD (Crohns or Ulcerstive collitis) were not ruled out.
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amother
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Wed, Mar 08 2023, 5:30 pm
| amother Poinsettia wrote: | | How did they definitively rule out Crohns? Did he get a fecal calprotectin level? It's a stool sample that can be a part of IBD diagnosis. A scope (colonoscopy, endoscopy) are used to look for IBD. If he hasn't had this done then IBD (Crohns or Ulcerstive collitis) were not ruled out. |
He had endoscopy done, Crohn's was ruled out from that, I believe (and maybe from a blood or fecal test, too?)
I'll need to double check the stool test to see if there's a calprotectin level.
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amother
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Wed, Mar 08 2023, 5:33 pm
Yes, I remember reading that thread. I think it was mostly natural stuff. Pretty sure I asked some questions there lol but will reread it, thanks
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amother
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Wed, Mar 08 2023, 5:35 pm
| amother OP wrote: | He had endoscopy done, Crohn's was ruled out from that, I believe (and maybe from a blood or fecal test, too?)
I'll need to double check the stool test to see if there's a calprotectin level. |
Did he have a colonoscopy? Endoscopy doesn’t rule out Chrohn’s afaik.
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amother
Lightgreen
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Wed, Mar 08 2023, 5:35 pm
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IBS is when there is no found medical cause such as Chrons, but there is GI pain. There is a strong correlation with anxiety or depression.
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amother
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Wed, Mar 08 2023, 5:38 pm
| amother OP wrote: | He had endoscopy done, Crohn's was ruled out from that, I believe (and maybe from a blood or fecal test, too?)
I'll need to double check the stool test to see if there's a calprotectin level. |
You need to find out if he had a colonoscopy done. Colonoscopy looks at the large intestine. It cannot visualize the small intestine though. Meaning, it's possible to have Crohns and have a clean scope. This is where a video endoscopy (where a capsule with a camera inside is swallowed) can be helpful.
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amother
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Wed, Mar 08 2023, 5:56 pm
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Crohn's cannot be ruled out without a colonoscopy or a capsule endoscopy. My son's bloodwork and calprotectin is perfect.
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amother
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Wed, Mar 08 2023, 6:00 pm
| amother Junglegreen wrote: | | Crohn's cannot be ruled out without a colonoscopy. My son's bloodwork and calprotectin is perfect. Endoscopy can't see into the colon. |
That's so interesting that his calprotectin was normal. My child's levels were extremely elevated and it still took a long time (and several doctors) to get a Crohn's diagnosis. It's so important to have a good doctor and to advocate for your child, I don't care how old he/she is.
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amother
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Wed, Mar 08 2023, 6:04 pm
| amother Poinsettia wrote: | | That's so interesting that his calprotectin was normal. My child's levels were extremely elevated and it still took a long time (and several doctors) to get a Crohn's diagnosis. It's so important to have a good doctor and to advocate for your child, I don't care how old he/she is. |
Yes, that is why I am pushing OP to make an appointment with Dr. Dubinsky. She is very humble and will be the first to say no 2 Crohn's are alike. That is why she took her time in diagnosing my son. His case was not typical, but that is not that unusual. She told me 20% of Crohn's cases resolve with no intervention at all. That is why I get upset when I see mention of Crohn's as a devastating disease. That is not the case for many, especially for those who had good care in a timely fashion.
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amother
Papayawhip
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Wed, Mar 08 2023, 6:16 pm
| amother Junglegreen wrote: | | Yes, that is why I am pushing OP to make an appointment with Dr. Dubinsky. She is very humble and will be the first to say no 2 Crohn's are alike. That is why she took her time in diagnosing my son. His case was not typical, but that is not that unusual. She told me 20% of Crohn's cases resolve with no intervention at all. That is why I get upset when I see mention of Crohn's as a devastating disease. That is not the case for many, especially for those who had good care in a timely fashion. |
And the other 80 percent if not addressed results in a hole in the illium. Who wants to take chances with that?
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amother
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Wed, Mar 08 2023, 6:23 pm
| amother Junglegreen wrote: | | Crohn's cannot be ruled out without a colonoscopy or a capsule endoscopy. My son's bloodwork and calprotectin is perfect. |
Oh, didn't realize it. I asked DS about it now and he said that Dr said his symptoms didn't sound like Crohn's (maybe the pain is on different sides of stomach?)
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amother
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Wed, Mar 08 2023, 6:26 pm
| amother Lightgreen wrote: | | IBS is when there is no found medical cause such as Chrons, but there is GI pain. There is a strong correlation with anxiety or depression. |
Yeah, I realize they usually say it's IBS if everything else is ruled out
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amother
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Wed, Mar 08 2023, 6:27 pm
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Guess, I'll be calling Dr dubinsky tomorrow
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amother
Navyblue
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Wed, Mar 08 2023, 6:54 pm
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I had colitis and mono at different times during my teen years. The Sarno method helped cure me. Read the mind body prescription or healing back pain by Dr. Sarno
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amother
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Thu, Mar 09 2023, 5:51 am
| amother Papayawhip wrote: | | And the other 80 percent if not addressed results in a hole in the illium. Who wants to take chances with that? |
NO ONE does. That's why I keep telling OP to make an appointment with Dr. Dubinsky
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amother
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Thu, Mar 09 2023, 5:54 am
| amother OP wrote: | | Oh, didn't realize it. I asked DS about it now and he said that Dr said his symptoms didn't sound like Crohn's (maybe the pain is on different sides of stomach?) |
Pardon my bluntness but your Dr. sounds like a fool. He should have referred you to a GI immediately. And Crohn's and other types of IBD can have a wide variation of presentation.
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amother
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Thu, Mar 09 2023, 5:58 am
| amother OP wrote: | | Oh, didn't realize it. I asked DS about it now and he said that Dr said his symptoms didn't sound like Crohn's (maybe the pain is on different sides of stomach?) |
I can’t imagine a GI not ordering a colonoscopy or capsule endoscopy for persisting stomach issues. I know a colonoscopy is truly unpleasant but it’s a pretty standard diagnostic tool.
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