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My Daughter Has EDS And Is Having Many Digestive Issues
Question: My daughter has EDS and is having many digestive issues including food intolerances food allergies face flushing visavagles ect... what can I do?
Brief Answer:
Please see details
Detailed Answer:
Hi and Welcome to 'Ask A Doctor' service.
I have read your question and here is my advice.
Sorry to hear of her problem, I understand your concern and the difficulty she is suffering.
There may many problems related to EDS. The stomach problems you said may be related to her EDS or it may be a separate problem. So that needs a bit more evaluation like since how long these problems are.
Problems related to EDS include GERD, dyspepsia or short bowel syndrome that may cause such problems.
However, this may be a separate problem that would need consideration. One problem associated with EDS is the celiac disease which needs special consideration here. Besides this, we need to look for malabsorption syndromes like enzyme deficiencies and peptic ulcer disease.
If many tests are done are negative, then probably we need to go for endoscopy (seeing her stomach with a scope).
Hot flushes with diarrhoea may also need to rule out carcinoid syndrome which is very rare.
Once all tests are normal, we need to consider IBS (irritable bowel syndrome) as one possible cause, but let it be the last to think about.
So the possible causes are many. So would need detailed evaluation. This is best done by a gastroenterologist. So I would like to discuss this with a gastroenterologist for thorough evaluation and management.
Hopes this answer helps you. Please let me know if you have any further questions about it.
Regards
Dr Mahboob ur Rahman
Please see details
Detailed Answer:
Hi and Welcome to 'Ask A Doctor' service.
I have read your question and here is my advice.
Sorry to hear of her problem, I understand your concern and the difficulty she is suffering.
There may many problems related to EDS. The stomach problems you said may be related to her EDS or it may be a separate problem. So that needs a bit more evaluation like since how long these problems are.
Problems related to EDS include GERD, dyspepsia or short bowel syndrome that may cause such problems.
However, this may be a separate problem that would need consideration. One problem associated with EDS is the celiac disease which needs special consideration here. Besides this, we need to look for malabsorption syndromes like enzyme deficiencies and peptic ulcer disease.
If many tests are done are negative, then probably we need to go for endoscopy (seeing her stomach with a scope).
Hot flushes with diarrhoea may also need to rule out carcinoid syndrome which is very rare.
Once all tests are normal, we need to consider IBS (irritable bowel syndrome) as one possible cause, but let it be the last to think about.
So the possible causes are many. So would need detailed evaluation. This is best done by a gastroenterologist. So I would like to discuss this with a gastroenterologist for thorough evaluation and management.
Hopes this answer helps you. Please let me know if you have any further questions about it.
Regards
Dr Mahboob ur Rahman
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
Thank you for your quick response to my question...she has been seen by several GI doctors in ny and nj..she has had an endoscopy wich found a small benign polyp in the stomach... not the problem..also she has had a colonoscopy done...nothing there...all the "general" stomach problems have been ruled out .. her food allergies and intolerances are getting worse...tried TMS treatment as well along with a TMS psychologist nothing is working...going to see a functional medicine doctor soon...dietitian and more testing....what could we be missing this has been going on for years...leaky gut...elimination diets ect... the food intolerances ect.. are getting worse more and more food is being eliminated from her diet she is eating big meals at one time ..wich isn't good due to not being able to snack on anything such as nuts ect... especially while she is at work . Please help..I don"t know what else to do...not to mention the anxiety and deppression this is causing to herself and my husband and I as well..don't know where else to turn...what could we be missing?
Brief Answer:
Please, if you could answer a few more questions about it.
Detailed Answer:
Hi,
Thanks for writing back.
I can understand the difficulty of the situation.
However, one thing is promising here, that if this has been for many years and she has not lost weight, and her endoscopy and colonoscopy has been normal, then this is probably not something too critical although can be troublesome.
Many times, mental health disorders are responsible for such stomach problems, just want to know if you could provide answers to few of my question to better understand the problems.
1. Did she lost weight or dropped her blood level or any fever.?
2. How is her mood lately?
3. Did she use any medicine for depression?
4. Did she get her tests for celiac disease, thyroid disease?
5. Does she able to digest any specific group of foods (if you could mention few please)?
6. Did she get tests for malabsorption like if her body calcium level, or blood level, or albumin was low any time?
I am asking these question to know the problems and if I could help somehow.
Please let me know about it in details.
Regards
Please, if you could answer a few more questions about it.
Detailed Answer:
Hi,
Thanks for writing back.
I can understand the difficulty of the situation.
However, one thing is promising here, that if this has been for many years and she has not lost weight, and her endoscopy and colonoscopy has been normal, then this is probably not something too critical although can be troublesome.
Many times, mental health disorders are responsible for such stomach problems, just want to know if you could provide answers to few of my question to better understand the problems.
1. Did she lost weight or dropped her blood level or any fever.?
2. How is her mood lately?
3. Did she use any medicine for depression?
4. Did she get her tests for celiac disease, thyroid disease?
5. Does she able to digest any specific group of foods (if you could mention few please)?
6. Did she get tests for malabsorption like if her body calcium level, or blood level, or albumin was low any time?
I am asking these question to know the problems and if I could help somehow.
Please let me know about it in details.
Regards
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
Thank you. This si very true and no doubt has a role in what is going on with her..she is aware of this as well..hence the TMS Going back to have more testing done is to make sure we are not missing anything more serious such as parasites ect... to answer some of your questions starting with #1- She has not lost any weight..gained afew pounds I think from sress and eating big meals in one sitting because she is unable to snack on anything inbetween due to intolerances and allergies..she did wake uo with night sweats and a fever 2 years back in oct. witch seems to be when this all started. #2- Her mood lately is not good she is very depressed due to her situation and is trying very hard not to be..trying to enjoy life but with everything revolving around eating..what and when it is very hard for her to socialize..most people do not understand her situation.#3 Yes she was on some antidepressants mostly for pain due to EDS and nerve medication(pain killers) for the same..she did not like them nor did they help.#4- Yes for both - breath tests , glucose,stool samples, ect.. all negative. #5 yes mainly fish cooked with olive oil..not salmon anymore for some rreason it does not agree with her anymore,chicken,mainly roasted vegetables with the exception of some..onion,sweetpotatoe...latley..not even teamed anymore..certian ways you cook food is easier to digest...very rarely will she eat steak anymore...she eats well with the foods she can eat..certain olives ect...to snack on some fruits..she is allergic to apple all of a sudden..but more and more foods seem to be getting eliminated.#6 she is lacking vitamin D and certian stains of probiotic she is taking vitamin D and collegen did not want to try any probiotics yet for fear of more side effects at the moment without really knowing what is going on...calcium levles and blood levles were fine..don't know what albumin is or if she had any testing for that...also very sr
trange there are some foods such as peppers , olives that don't bother her..but onion and garlic will..she does not eat any surgar bread pasta gluten..is pretty much eating to heal the gut but is having intolerances even to the "healthy" foods for the gut she would like to eat.
trange there are some foods such as peppers , olives that don't bother her..but onion and garlic will..she does not eat any surgar bread pasta gluten..is pretty much eating to heal the gut but is having intolerances even to the "healthy" foods for the gut she would like to eat.
Brief Answer:
Please see details
Detailed Answer:
Hi.. Thanks for providing the good details. I am sorry for getting late with the reply.
Things probably looks to be very much related to her mind but you are very right that we should not miss anything serious. But If she has not lost weight, and her blood, and calsium levels are normal, and that her all other tests are normal, this all is very re assuring.,that's very likely nothing is going to be very serious. There is a test called "fecal calprptactin" (may be its done already) which if negative make gut diseases extremely unlikely.
Mostly if any gut diseases occur, for months, they do cause low blood and low calsium and low album(body protein).so we should be confident that very probably nothing major disease we are missing.
One rare disorder of gut is whipple disease ( causes joint pains, along with diarrhea and fever and some brains and heart involvement) but all the above tests once normal make this unlikely.
I understand the difficulties of the situation, even I hardly understand this why she is not helped by so many things but let's keep the fingers crossed. Probably talking to dieticians, more hard work with psychiatrist, are options to focus on.
I hope things get better and wish her good health.
I appreciate the difficulty in rightly understanding her problems exactly, and the shortcomings in this field of medicine sometimes , but it's good that major diseases have been ruled out.
Please don't hesitate to ask a thing else.
I would be glad if I could help you somehow.
Please see details
Detailed Answer:
Hi.. Thanks for providing the good details. I am sorry for getting late with the reply.
Things probably looks to be very much related to her mind but you are very right that we should not miss anything serious. But If she has not lost weight, and her blood, and calsium levels are normal, and that her all other tests are normal, this all is very re assuring.,that's very likely nothing is going to be very serious. There is a test called "fecal calprptactin" (may be its done already) which if negative make gut diseases extremely unlikely.
Mostly if any gut diseases occur, for months, they do cause low blood and low calsium and low album(body protein).so we should be confident that very probably nothing major disease we are missing.
One rare disorder of gut is whipple disease ( causes joint pains, along with diarrhea and fever and some brains and heart involvement) but all the above tests once normal make this unlikely.
I understand the difficulties of the situation, even I hardly understand this why she is not helped by so many things but let's keep the fingers crossed. Probably talking to dieticians, more hard work with psychiatrist, are options to focus on.
I hope things get better and wish her good health.
I appreciate the difficulty in rightly understanding her problems exactly, and the shortcomings in this field of medicine sometimes , but it's good that major diseases have been ruled out.
Please don't hesitate to ask a thing else.
I would be glad if I could help you somehow.
Above answer was peer-reviewed by :
Dr. Remy Koshy
I can't than you enough for your honesty and understanding, it is extremely refreshing to have someone as genuine as you who really wants to help. ( and you are so I thank you!) She wants to see a functional medicine dr next and a dietitian so it is funny that you mentioned that..(makes me feel that we may be hopefully on the right tract. I will check to make sure she has had the above tests done...Once again I truly thank you for your help,it means alot to me.
Brief Answer:
Thanks alot for your nice words.
Detailed Answer:
I am really thankful to you for your great words and I am pleased if I could have helped you.
I can really feel the deficulty of the situations and appreciate the great efforts you have been doing for her. I wish her great health.
Thanks alot for your nice words.
Detailed Answer:
I am really thankful to you for your great words and I am pleased if I could have helped you.
I can really feel the deficulty of the situations and appreciate the great efforts you have been doing for her. I wish her great health.
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Above answer was peer-reviewed by :
Dr. Vaishalee Punj
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