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Help! Soooo Frustrated!


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#1 Juliebove

 
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Posted 05 February 2013 - 07:04 PM

Daughter is now 14 and has had stomach and other issues her entire life. I tried to breast feed her because allergies run in the family but... I couldn't produce enough milk. I did give her what I had because she preferred it but every kind gave her problems. Anything that was milk based caused projectile vomiting and sometimes the big D. The soy stuff constipated her and gave her an anal fissure. At the time I think the most allergenic kind on the market was Nutrium and that just didn't work for her. She also wouldn't gain much weight.

I put her on milk right at her first birthday. And oddly enough she did better. Seemed to have no stomach problems for a while and began gaining weight rapidly. She also had all of her teeth by a year and there was pretty much nothing she wouldn't eat at that age. Was very good to try things.

She did have a few problems up to age 4. Odd skin rashes and allergic reactions to mosquito bites. Dr. said I was bathing her too often and causing her skin to dry out. So I cut back to one bath a week unless she looked really dirty and just made do with baby wipes otherwise. She did have some cold/flu type things then. Also allergies. Sent to allergist who did not test for foods. Only inhalents and grass was a big one. We were living in CA then.

Moved to NY when she was 4. Major troubles began. Chronic UTIs. Frequent big D and stomach pains. Ear infections. She was sent to the allergist and they did not test for food allergies but inhalents and she did have those. She has tried every allergy product on the market. They either do nothing, or cause side effects like nose bleeds. No cause found for the UTIs at that point. Dr. said she had frequent bouts of strep and in a kid of that age it affected the stomach. So I was giving her drinkable yogurt. It was the only thing she would eat/drink aside from tiny sips of water given to her while she was sleeping.

Moved here to WA when she was 6. UTI's continued. Cause of those was found. Caffeine and constipation. The constipation caused her not to be able to fully empty her bladder and the caffeine was irritating her uretha. She did eliminate caffeine for a long time but now at age 14 is drinking coffee. I know, I know but we live in the Seattle area and we start young here! Mostly she drinks decaf but she does have the real thing on occasion. So far so good there.

But... She gets every stinking thing that goes around and then some. She is sick ore than not. In past years teachers would be furious with me and act like I was just keeping her home because I wanted to. One Dr. (someone just filling in) said maybe she was depressed and thought she was faking an illness. But two days later when she was no better, I had to take her back. Bad ear infection! So she gets those, throat stuff, sinus infections and worst of all chronic big D. When she gets the big D, it can last for almost a week or even a week to 10 days. She did at one point get gastritis from an antibiotic she was on. She has full on allergic reactions to many meds. And she had whooping cough last year.

My main frustration now is the big D. I do not think she has celiac. She has never had an endoscopy but the gastroenterologist did do some sort of blood test that I think was for that. She is currently eating wheat and gluten. He did a whole slew of tests and they turned up nothing. He is convinced that it is a food allergy or intolerance.

She has been to an allergist here. Apparently most of her inhalent allergies are much lessened to gone. Nothing turned up with food but she only tested for those specific things that we knew she was intolerant to at the time which were almonds, peanuts, wheat, gluten, eggs, dairy and soy. She has been tested several times since then and things do change. Still can't have the almonds or peanuts but can have the other but... She does have a thyroid problem so we try not to do soy. Yes, there is soy lecithin or soybean oil in stuff and we tend not to pay that much mind but... I do not cook with soybean oil at home. I just realize that it is used in restaurants and some prepared foods. Gastro Dr. did check for a wheat allergy and she doesn't have one.

And she also has pre-diabetes. Long story short there she was gaining about 10 pounds a week and had darkened skin...acanthosis nigricans which I know is a sign of insulin resistance. So I took her to my Endo. who discovered that she was on the wrong dose of her thyroid med and also discovered that she produces waaaay too much insulin. So he put her on a diabetes med and the main side effect of that is big D. We had to keep taking her off of the med because of this. AFAIK there is no other med that can be used in her case. Another Dr. said there were other options but I don't know what those are. She has never had high blood sugar AFAIK. Just insulin resistance and produces too much insulin. Which is why we wound up going to the Gastro. He lowered her dose of Metformin from 5 pills a day to three and put her on Welchol which didn't thrill me. That's a cholesterol med but the main side effect of that is constipation. So it does seem to help some. Some of the time.

But today? The big D is back again. Literally all day. Poor kid is on the toilet more than off. And we really just do not know why. We can't seem to link it to any particular food or drink. We have kept a food log and the only thing we found from that is that she can not have the banana containing drinks from Jamba Juice. For some reason they make her throat itch. But any other bananas are fine.

But I feel very bad for her and wish this would stop! Drs. have said that the BRAT diet is no longer used but I always seem to resort to that thinking it will give her stomach a break. Just doesn't seem to help though I am sooo frustrated! She thought maybe it was a menstrual thing (sorry guys). She is just now starting to get a regular cycle and for her, she seems to get the big D at the end of it. Odd because I was just the opposite! Had it at the beginning. If I eat white rice and applesauce for a day my big D will often clear up. Although I myself had it for literally like 3 months running and I do mean running! Bad joke. No cause was found there and no med helped. But... I did not know of my own food intolerances back then and I was eating a lot of eggs and cottage cheese, both of which I know now that I can not have.

So... Currently she is on the South Beach diet. Eats brown rice, whole grain pastas and breads that are not gluten-free but... When she was gluten-free (and we were very careful to avoid cc and such) she still had the same problem so I know it's not that. She eats chicken, once in a while ground beef, steak or tuna. She likes salad mostly with honey mustard dressing or no dressing at all. Baby carrots. Canned green beans. Sometimes corn or peas. Popcorn. Yes, we do take a few liberties with these diets. Some dried beans. Cheese. Apples. Unsweetened applesauce. Corn tortillas. Sweet potatoes. That is basically her diet. I do have to be super careful with seasonings because she can't have basil and I can't have a variety of herbs and spices so much of what we eat is cooked from scratch. She mostly prefers a simple diet of plain food, perhaps with some salt and a little pepper but she's not so big into sauces. She will eat tomato sauce and I do put onions and peppers in that. She will eat raw red bell peppers but she's not a big veggie lover except for the carrots and green beans.

I do intend to start another food log but those are a PITA and because we both have the kind of intolerances that have a delayed reaction, so far when I have tried this they haven't done us much good.

Oh and yes, I am on her like a fiend to wash her hands frequently and the Drs. have mentioned this too. So... Does anyone have any other suggestions? I would just like her to be well!

I take a huge variety of supplements myself and I don't know if it is those or just my age, but I rarely seem to get sick now. At least not with contagious stuff. I tried giving her those things but they don't really seem to help. Oh and she does take a probiotic. She had her appendix out just before her 3rd birthday but then afterwards they determined that it wasn't that at all but peritonitis.
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#2 shadowicewolf

 
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Posted 05 February 2013 - 08:35 PM

Poor kid :(

Just some thoughts:

On the UTI thing, if you live in a humid climite, i've heard that you can get them more than in a dry one. Not sure if this holds any truth, however.

Is she by chance sensative to latex? People with major allergic reactions to it have to avoid soy and bannanas (along with a few other things i cannot list off of the top of my head) because they contain a form of it.

Another thought, try to remove all canned items for a while and cook your own green beans. There could be something with that that may be causing an issue.

Has she had her gallbladder checked? It can be a cause of "D" running wild (if ya get what i mean), especially if it isn't working right.

Cycles do weird things to your body. Perhaps it triggered something?

Just some ideas to try. I know the feeling with the "D" though. I had it and vomiting for around 2 or so months. Not fun not fun.
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#3 Juliebove

 
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Posted 06 February 2013 - 06:58 AM

Poor kid :(

Just some thoughts:

On the UTI thing, if you live in a humid climite, i've heard that you can get them more than in a dry one. Not sure if this holds any truth, however.

Is she by chance sensative to latex? People with major allergic reactions to it have to avoid soy and bannanas (along with a few other things i cannot list off of the top of my head) because they contain a form of it.

Another thought, try to remove all canned items for a while and cook your own green beans. There could be something with that that may be causing an issue.

Has she had her gallbladder checked? It can be a cause of "D" running wild (if ya get what i mean), especially if it isn't working right.

Cycles do weird things to your body. Perhaps it triggered something?

Just some ideas to try. I know the feeling with the "D" though. I had it and vomiting for around 2 or so months. Not fun not fun.


Not normally humid.

No problems with latex, AFAIK.

Won't eat any green beans other than canned.

Has not had gallbladder checked but this doesn't seem like how it was for my dad when his was acting up. Still will mention it next time she goes in.

Thanks!
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#4 LMB03

 
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Posted 06 February 2013 - 01:19 PM

Daughter is now 14 and has had stomach and other issues her entire life. I tried to breast feed her because allergies run in the family but... I couldn't produce enough milk. I did give her what I had because she preferred it but every kind gave her problems. Anything that was milk based caused projectile vomiting and sometimes the big D. The soy stuff constipated her and gave her an anal fissure. At the time I think the most allergenic kind on the market was Nutrium and that just didn't work for her. She also wouldn't gain much weight.

I put her on milk right at her first birthday. And oddly enough she did better. Seemed to have no stomach problems for a while and began gaining weight rapidly. She also had all of her teeth by a year and there was pretty much nothing she wouldn't eat at that age. Was very good to try things.

She did have a few problems up to age 4. Odd skin rashes and allergic reactions to mosquito bites. Dr. said I was bathing her too often and causing her skin to dry out. So I cut back to one bath a week unless she looked really dirty and just made do with baby wipes otherwise. She did have some cold/flu type things then. Also allergies. Sent to allergist who did not test for foods. Only inhalents and grass was a big one. We were living in CA then.

Moved to NY when she was 4. Major troubles began. Chronic UTIs. Frequent big D and stomach pains. Ear infections. She was sent to the allergist and they did not test for food allergies but inhalents and she did have those. She has tried every allergy product on the market. They either do nothing, or cause side effects like nose bleeds. No cause found for the UTIs at that point. Dr. said she had frequent bouts of strep and in a kid of that age it affected the stomach. So I was giving her drinkable yogurt. It was the only thing she would eat/drink aside from tiny sips of water given to her while she was sleeping.

Moved here to WA when she was 6. UTI's continued. Cause of those was found. Caffeine and constipation. The constipation caused her not to be able to fully empty her bladder and the caffeine was irritating her uretha. She did eliminate caffeine for a long time but now at age 14 is drinking coffee. I know, I know but we live in the Seattle area and we start young here! Mostly she drinks decaf but she does have the real thing on occasion. So far so good there.

But... She gets every stinking thing that goes around and then some. She is sick ore than not. In past years teachers would be furious with me and act like I was just keeping her home because I wanted to. One Dr. (someone just filling in) said maybe she was depressed and thought she was faking an illness. But two days later when she was no better, I had to take her back. Bad ear infection! So she gets those, throat stuff, sinus infections and worst of all chronic big D. When she gets the big D, it can last for almost a week or even a week to 10 days. She did at one point get gastritis from an antibiotic she was on. She has full on allergic reactions to many meds. And she had whooping cough last year.

My main frustration now is the big D. I do not think she has celiac. She has never had an endoscopy but the gastroenterologist did do some sort of blood test that I think was for that. She is currently eating wheat and gluten. He did a whole slew of tests and they turned up nothing. He is convinced that it is a food allergy or intolerance.

She has been to an allergist here. Apparently most of her inhalent allergies are much lessened to gone. Nothing turned up with food but she only tested for those specific things that we knew she was intolerant to at the time which were almonds, peanuts, wheat, gluten, eggs, dairy and soy. She has been tested several times since then and things do change. Still can't have the almonds or peanuts but can have the other but... She does have a thyroid problem so we try not to do soy. Yes, there is soy lecithin or soybean oil in stuff and we tend not to pay that much mind but... I do not cook with soybean oil at home. I just realize that it is used in restaurants and some prepared foods. Gastro Dr. did check for a wheat allergy and she doesn't have one.

And she also has pre-diabetes. Long story short there she was gaining about 10 pounds a week and had darkened skin...acanthosis nigricans which I know is a sign of insulin resistance. So I took her to my Endo. who discovered that she was on the wrong dose of her thyroid med and also discovered that she produces waaaay too much insulin. So he put her on a diabetes med and the main side effect of that is big D. We had to keep taking her off of the med because of this. AFAIK there is no other med that can be used in her case. Another Dr. said there were other options but I don't know what those are. She has never had high blood sugar AFAIK. Just insulin resistance and produces too much insulin. Which is why we wound up going to the Gastro. He lowered her dose of Metformin from 5 pills a day to three and put her on Welchol which didn't thrill me. That's a cholesterol med but the main side effect of that is constipation. So it does seem to help some. Some of the time.

But today? The big D is back again. Literally all day. Poor kid is on the toilet more than off. And we really just do not know why. We can't seem to link it to any particular food or drink. We have kept a food log and the only thing we found from that is that she can not have the banana containing drinks from Jamba Juice. For some reason they make her throat itch. But any other bananas are fine.

But I feel very bad for her and wish this would stop! Drs. have said that the BRAT diet is no longer used but I always seem to resort to that thinking it will give her stomach a break. Just doesn't seem to help though I am sooo frustrated! She thought maybe it was a menstrual thing (sorry guys). She is just now starting to get a regular cycle and for her, she seems to get the big D at the end of it. Odd because I was just the opposite! Had it at the beginning. If I eat white rice and applesauce for a day my big D will often clear up. Although I myself had it for literally like 3 months running and I do mean running! Bad joke. No cause was found there and no med helped. But... I did not know of my own food intolerances back then and I was eating a lot of eggs and cottage cheese, both of which I know now that I can not have.

So... Currently she is on the South Beach diet. Eats brown rice, whole grain pastas and breads that are not gluten-free but... When she was gluten-free (and we were very careful to avoid cc and such) she still had the same problem so I know it's not that. She eats chicken, once in a while ground beef, steak or tuna. She likes salad mostly with honey mustard dressing or no dressing at all. Baby carrots. Canned green beans. Sometimes corn or peas. Popcorn. Yes, we do take a few liberties with these diets. Some dried beans. Cheese. Apples. Unsweetened applesauce. Corn tortillas. Sweet potatoes. That is basically her diet. I do have to be super careful with seasonings because she can't have basil and I can't have a variety of herbs and spices so much of what we eat is cooked from scratch. She mostly prefers a simple diet of plain food, perhaps with some salt and a little pepper but she's not so big into sauces. She will eat tomato sauce and I do put onions and peppers in that. She will eat raw red bell peppers but she's not a big veggie lover except for the carrots and green beans.

I do intend to start another food log but those are a PITA and because we both have the kind of intolerances that have a delayed reaction, so far when I have tried this they haven't done us much good.

Oh and yes, I am on her like a fiend to wash her hands frequently and the Drs. have mentioned this too. So... Does anyone have any other suggestions? I would just like her to be well!

I take a huge variety of supplements myself and I don't know if it is those or just my age, but I rarely seem to get sick now. At least not with contagious stuff. I tried giving her those things but they don't really seem to help. Oh and she does take a probiotic. She had her appendix out just before her 3rd birthday but then afterwards they determined that it wasn't that at all but peritonitis.


Hi.

So I have spent MANY years trying to track down the source of my GI problems was. I was at wits end because I tested negative on all testing, scans, probing, and anything else the medical community threw at me. I then found a doctor who asked if I was ever tested for SIBO (small intestinal bacterial overgrowth). I said I had never been. She hooked me up with testing and... WAAALAHHHH...I tested positive and now on antibiotics, with a plan to me with someone to go over a SIBO friendly diet with me.

Has SIBO been discussed with you? If not, you may want to look into it.

Good luck to you!
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#5 Juliebove

 
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Posted 07 February 2013 - 01:40 AM

Hi.

So I have spent MANY years trying to track down the source of my GI problems was. I was at wits end because I tested negative on all testing, scans, probing, and anything else the medical community threw at me. I then found a doctor who asked if I was ever tested for SIBO (small intestinal bacterial overgrowth). I said I had never been. She hooked me up with testing and... WAAALAHHHH...I tested positive and now on antibiotics, with a plan to me with someone to go over a SIBO friendly diet with me.

Has SIBO been discussed with you? If not, you may want to look into it.

Good luck to you!


I only looked into it because I saw it talked about here but the stuff that both of us go through just doesn't seem to apply to either of us. Although I often have skin rashes and tend towards anemia if I don't eat meat (and I don't like meat much), she has no skin problems now aside from some pimples on occasion and oily skin but she is a teen. We do both have food sensitivities but the rest of what I see on the list of symptoms just doesn't usually seem to apply. When she had this last day long bout of D., there was no stomach pain at all. I suppose it could have been something going around because I had it myself two days prior. I had no stomach pain either. Just realized all of a sudden that I had to go! It's just that when she gets something that is going around in others... They'll have it for a day or two and she'll have it for a week to 10 days. Whatever this was, thankfully is gone now.
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#6 LMB03

 
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Posted 08 February 2013 - 08:53 AM

I only looked into it because I saw it talked about here but the stuff that both of us go through just doesn't seem to apply to either of us. Although I often have skin rashes and tend towards anemia if I don't eat meat (and I don't like meat much), she has no skin problems now aside from some pimples on occasion and oily skin but she is a teen. We do both have food sensitivities but the rest of what I see on the list of symptoms just doesn't usually seem to apply. When she had this last day long bout of D., there was no stomach pain at all. I suppose it could have been something going around because I had it myself two days prior. I had no stomach pain either. Just realized all of a sudden that I had to go! It's just that when she gets something that is going around in others... They'll have it for a day or two and she'll have it for a week to 10 days. Whatever this was, thankfully is gone now.


I also did not have the usual symptoms.
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#7 pricklypear1971

 
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Posted 08 February 2013 - 12:31 PM

I wonder if her thyroid is controlled? I read she's on meds, but is it working?

I had hideous C before I started thyroid supplamentation. And it would fluctuate with D. Of course, I was on gluten...

I also was sick all the time prior to thyroid meds.

I would ask to see the celiac tests they ran , to ensure it was a full panel. She definitely is AI..and sometimes gluten is a problem, even if it just aggrivates everything else. What I'm trying to say is that even though she trialed gluten-free and it apparently didn't affect the D, perhaps it's still aggravating her body.

Come to think of it, I'd want copies of all her tests...
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 Juliebove

 
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Posted 10 February 2013 - 03:56 AM

I wonder if her thyroid is controlled? I read she's on meds, but is it working?

I had hideous C before I started thyroid supplamentation. And it would fluctuate with D. Of course, I was on gluten...

I also was sick all the time prior to thyroid meds.

I would ask to see the celiac tests they ran , to ensure it was a full panel. She definitely is AI..and sometimes gluten is a problem, even if it just aggrivates everything else. What I'm trying to say is that even though she trialed gluten-free and it apparently didn't affect the D, perhaps it's still aggravating her body.

Come to think of it, I'd want copies of all her tests...


I always get all copies of our labs. Her thyroid appears fine. She hasn't had any C. in years. I can't remember how old she was when she did have that. But the big problem there was that she was not drinking much of anything during the day and when at home she was drinking pretty much only Diet Coke. She would not have so much as a sip of anything before school and then nothing at all at school. She was bringing her water bottle home, full. She has a fear of water fountains and will not use them. She thinks they are germy. That particular year, some kid had spilled water in the class via a water bottle the the teacher banned them except for at lunch. And since they only got 20 minutes for lunch, she was only eating and not drinking.

We have had no problems since then because the Dr. showed her the X Ray with the little balls of poop in her. She has made sure to drink lots of water since. Luckily when she had the C. problem it was towards the end of school. She had a different teacher the next year and she was allowed to have water.

She has been fine now since that problem last Tue. She even ate the same exact foods that she ate the night before the problem. No problems! So I suspect that it might have been something that was going around but she does seem to get everything that goes around.
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#9 pricklypear1971

 
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Posted 10 February 2013 - 07:34 AM

When they test her thyroid is it just tsh or do they do free t3/t4 and reverse t3? Because my tsh would look great but I still had issues (that I used to attribute to celiac). Only after being gluten-free and working on adrenals/thyroid with different supplaments and exercise can I see which is which. I couldn't believe how many digestive issues I had from my thyroid and hormones (and still do, from time to time).

And that's a lot for a young lady to sort out:). I hope this gets easier for all of you as she grows up and is able to talk about what is happening with her body. It's so difficult to be 14, much less 14 and dealing with AI issues.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 Juliebove

 
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Posted 10 February 2013 - 03:11 PM

When they test her thyroid is it just tsh or do they do free t3/t4 and reverse t3? Because my tsh would look great but I still had issues (that I used to attribute to celiac). Only after being gluten-free and working on adrenals/thyroid with different supplaments and exercise can I see which is which. I couldn't believe how many digestive issues I had from my thyroid and hormones (and still do, from time to time).

And that's a lot for a young lady to sort out:). I hope this gets easier for all of you as she grows up and is able to talk about what is happening with her body. It's so difficult to be 14, much less 14 and dealing with AI issues.


He tests everything.
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