Incorrect diagnosis?

[Jadesmom]

I hope someone can offer suggestions or ideas. My 14 Y.O. daughter was diagnosed with Celiac Disease in March. She's been strictly gluten free for five months (don't eat out, our family all went gluten-free at the same time and we only eat certified gluten-free or whole foods).  She's been gluten-free for five months and there has been no improvement in her gastric issues or weight gain.

Here is the story...she never had any gastric problems prior to this past December.  She has struggled with a stubborn and chronic patch of eczema on her face above her lip for years and has always been slight.  Around Christmas break she began to have chronic belching and reflux. It came on suddenly and out of nowhere. By early January she had abdominal pain and burning and  I took her to the pediatrician who ran some allergy, Celiac antibody and HPylori tests.  Celiac was negative, foods tested were negative and HPylori was positive.  We were so happy to have an answer. She went on the triple therapy for HPylori (2 strong antibiotics and a proton pump inhibitor) for two weeks.  She got worse and ended up with with an additional symptom of chronic nausea. She also lost about 10 lbs. from December to the end of January. She was already very thin at 96 lbs and 5'4 1/2. I pushed for an abdominal ultrasound which was normal. Took her to pediatric gastroenterologist who prescribed meds to calm stomach down. A few weeks later, she was still feeling miserable.  Pushed Gastro for endoscopy. He found marsh 3b villous atrophy in one section of the duodenal bulb and referred to it as "mild" and gave diagnosis of Celiac and negative for HPylori.  We were sad about the news but glad to get an answer and optimistic that she would finally feel better and started the gluten free diet the day of her diagnosis. 

Sooo, month after month she didn't get better. I pushed Gastro for more tests to rule out other conditions--stool test for giardia-negative and celiac gene test positive for HLA-DQ2 2 copies.   Went to very expensive celiac specialist who suggested may be SIBO and recommended VSL3 medical grade probiotics. After two months, no improvement.  Went back to celiac specialist who recommended digestive enzymes because it could be pancreatic enzyme insufficiency.  Daughter claims enzymes gave her bad pains so had to stop them. Five months gluten-free and still has chronic nausea, bloating, gas, stomach pain, chronic belching, constipation (never had diarrhea at any point) facial eczema, fatigue, shortness of breath, no weight gain, no period in 8 months, gets extremely hot like a menopausal woman, feels like something is stuck in her throat.

Her negative serology and not getting better are nagging at me that maybe it's not celiac?  She is also dairy and soy free, by the way. Anyone have any thoughts?  Help? 

[tessa25]

Did she get the full celiac blood test? It includes

TTG IGA

TTG IGG

DGP IGA

DGP IGG

EMA

IGA

You only need a positive on any one test to need the endoscopy, which she has had.

Anyway if she hasn't gotten all of the above blood tests then perhaps she can get them now. If one of the numbers is high you can use that as a baseline then check again  in a couple of months to see if that number is going down on the gluten free diet. No gluten challenge necessary since she is already diagnosed. If the numbers are going down thatwould show that gluten free is working.

Perhaps she would benefit from a simple diet of eggs, mild soups and stews, water to help things settle down.

 

[Another PO'ed Celiac]

Try treating Candida?  If she feels better after a week or so on something like fluconazole, I bet that could be the issue.  It can cause all that and more! Especially after exposure to antibiotics.  It can't hurt and is a rather simple step to try to rule out.

[knitty kitty]

1 hour ago, Jadesmom said:

I hope someone can offer suggestions or ideas. My 14 Y.O. daughter was diagnosed with Celiac Disease in March. She's been strictly gluten free for five months (don't eat out, our family all went gluten-free at the same time and we only eat certified gluten-free or whole foods).  She's been gluten-free for five months and there has been no improvement in her gastric issues or weight gain.

Here is the story...she never had any gastric problems prior to this past December.  She has struggled with a stubborn and chronic patch of eczema on her face above her lip for years and has always been slight.  Around Christmas break she began to have chronic belching and reflux. It came on suddenly and out of nowhere. By early January she had abdominal pain and burning and  I took her to the pediatrician who ran some allergy, Celiac antibody and HPylori tests.  Celiac was negative, foods tested were negative and HPylori was positive.  We were so happy to have an answer. She went on the triple therapy for HPylori (2 strong antibiotics and a proton pump inhibitor) for two weeks.  She got worse and ended up with with an additional symptom of chronic nausea. She also lost about 10 lbs. from December to the end of January. She was already very thin at 96 lbs and 5'4 1/2. I pushed for an abdominal ultrasound which was normal. Took her to pediatric gastroenterologist who prescribed meds to calm stomach down. A few weeks later, she was still feeling miserable.  Pushed Gastro for endoscopy. He found marsh 3b villous atrophy in one section of the duodenal bulb and referred to it as "mild" and gave diagnosis of Celiac and negative for HPylori.  We were sad about the news but glad to get an answer and optimistic that she would finally feel better and started the gluten free diet the day of her diagnosis. 

Sooo, month after month she didn't get better. I pushed Gastro for more tests to rule out other conditions--stool test for giardia-negative and celiac gene test positive for HLA-DQ2 2 copies.   Went to very expensive celiac specialist who suggested may be SIBO and recommended VSL3 medical grade probiotics. After two months, no improvement.  Went back to celiac specialist who recommended digestive enzymes because it could be pancreatic enzyme insufficiency.  Daughter claims enzymes gave her bad pains so had to stop them. Five months gluten-free and still has chronic nausea, bloating, gas, stomach pain, chronic belching, constipation (never had diarrhea at any point) facial eczema, fatigue, shortness of breath, no weight gain, no period in 8 months, gets extremely hot like a menopausal woman, feels like something is stuck in her throat.

Her negative serology and not getting better are nagging at me that maybe it's not celiac?  She is also dairy and soy free, by the way. Anyone have any thoughts?  Help? 

Has your daughter been checked for vitamin and mineral deficiencies?

Celiac Disease causes malabsorption which results in malnutrition.  Celiac Disease damages the intestines so that essential nutrients aren't absorbed.  

Hot flashes and night sweats may be caused by vitamin B12 deficiency.  Slow growth, amenorrhea (no period) and constipation can be related to severe vitamin D deficiency.  Deficiencies of iron, folate, calcium and magnesium could be contributing to these, and pancreatic insufficiency, too.  Eosinophilic esophagitis (your daughter's feeling of something in her throat) is also a sign of severe vitamin D deficiency.  Deficiencies in other B vitamins manifest as skin rashes.  

Supplementation may be necessary until the intestines heal a bit more and can better absorb nutrients. 

Probiotics containing lactobacillus and bifidobacteria might be beneficial to help reestablish healthy flora in the intestinal tract after all those antibiotics.  

You may want to consider removing processed grains of all kinds after reading this article.

Open Original Shared Link

 

I became severely vitamin and mineral deficient due to Celiac Disease.  The doctor treated the symptoms, but didn't investigate the cause.  When my doctor decided to humor me and test my vitamin D level (because my insurance would cover it), he was astounded.  My vitamin D was so low, he was surprised I was still walking around.  As my vitamin deficiencies were resolved, my health improved dramatically.  Please don't discount how important vitamins and minerals are.  Hope this helps.

[DrubNonie]

Did you do IGENEX test for lyme? 

[cyclinglady]

She can have more than one issue going on.  Has EOE been ruled out?  

Open Original Shared Link

Crohn's Disease?  My niece was diagnosed at 19 and suffered for a few years prior to her diagnosis.  I thought for sure she had celiac disease (she is tiny!!!!), but all tests were negative.  Her 4th GI ordered a pill camera.  Her damage was located beyond the reach of both scopes.  She surprisingly did not have any of the typical Crohn's symptoms except occasional severe abdominal pain.  

[Jadesmom]

tessa25, she did not have every antibody test run initially (January), but did have TTG IGA, IGA and EMA and they were negative.  This was prior to endoscopy in March.  As of March, she's been 100% gluten-free and they didn't feel testing would be beneficial.  Last month, I pushed for the full panel (every celiac antibody test now including TTG IGG, DGP IGG and DGP IGA ) even though she'd been gluten-free for almost 5 months to see if that could give us a clue.  All were considered negative.

DGP IGA: 4

DGP IGG: 14

TTG IGA: <2

TTG IGG: 3

EMA: Negative

IGA: 108

 

 

  

[Jadesmom]

On 8/15/2017 at 10:40 PM, Another PO'ed Celiac said:

Try treating Candida?  If she feels better after a week or so on something like fluconazole, I bet that could be the issue.  It can cause all that and more! Especially after exposure to antibiotics.  It can't hurt and is a rather simple step to try to rule out.

Thanks for the suggestion.  Celiac specialist and regular gastro do not believe it to be the issue.  Asked for the medication to try it but gastro does not want to prescribe it. 

[Jadesmom]

On 8/16/2017 at 0:58 AM, cyclinglady said:

She can have more than one issue going on.  Has EOE been ruled out?  

Open Original Shared Link

Crohn's Disease?  My niece was diagnosed at 19 and suffered for a few years prior to her diagnosis.  I thought for sure she had celiac disease (she is tiny!!!!), but all tests were negative.  Her 4th GI ordered a pill camera.  Her damage was located beyond the reach of both scopes.  She surprisingly did not have any of the typical Crohn's symptoms except occasional severe abdominal pain.  

She never had a colonoscopy so we are repeating the endocopy and also doing colonoscopy in a few weeks to see if duodenal bulb villous atrophy is healed and look at lower intestines to rule out Crohn's or Colitis.  ugh.

[cyclinglady]

5 minutes ago, Jadesmom said:

Thanks for the suggestion.  Celiac specialist and regular gastro do not believe it to be the issue.  Asked for the medication to try it but gastro does not want to prescribe it. 

That medication can damage your liver!  

[Jadesmom]

On 8/15/2017 at 11:03 PM, knitty kitty said:

Has your daughter been checked for vitamin and mineral deficiencies?

Celiac Disease causes malabsorption which results in malnutrition.  Celiac Disease damages the intestines so that essential nutrients aren't absorbed.  

Hot flashes and night sweats may be caused by vitamin B12 deficiency.  Slow growth, amenorrhea (no period) and constipation can be related to severe vitamin D deficiency.  Deficiencies of iron, folate, calcium and magnesium could be contributing to these, and pancreatic insufficiency, too.  Eosinophilic esophagitis (your daughter's feeling of something in her throat) is also a sign of severe vitamin D deficiency.  Deficiencies in other B vitamins manifest as skin rashes.  

Supplementation may be necessary until the intestines heal a bit more and can better absorb nutrients. 

Probiotics containing lactobacillus and bifidobacteria might be beneficial to help reestablish healthy flora in the intestinal tract after all those antibiotics.  

You may want to consider removing processed grains of all kinds after reading this article.

Open Original Shared Link

 

I became severely vitamin and mineral deficient due to Celiac Disease.  The doctor treated the symptoms, but didn't investigate the cause.  When my doctor decided to humor me and test my vitamin D level (because my insurance would cover it), he was astounded.  My vitamin D was so low, he was surprised I was still walking around.  As my vitamin deficiencies were resolved, my health improved dramatically.  Please don't discount how important vitamins and minerals are.  Hope this helps.

Thank you for your reply.  Yes, all were normal except Vitamin D was low in April.  Put her on liquid D supplements and her D was at a great level by July.  She's incredibly difficult about taking supplements claiming everything "bothers her".  She'd been off most grains (only brown rice and some tapioca) all along, nightshades, soy, all forms of dairy for months and very little refined sugar.  As of almost two weeks ago, I have her off all grains, zero refined sugar, dairy, soy, nuts, seeds, and nightshades.   So basically following Autoimmune Paleo.  She seemed a bit better during the first week, but then caught a head cold and her gastric issues went South again. I wonder if it's from drainage, who knows.  It's all so impossible.  I felt that she needed plain kefir and yogurt for good bacteria (no sugar added), so we tried adding that for a few days this week.  Maybe that was a mistake.

I'm looking into getting her liquid multivitamins, as well.

 

 

[Gemini]

I presented the exact same way as your daughter, only I was 46 years old at the time.  I also have a double DQ-2 gene and that means it will be more severe...which you already know and I already know, from experience.  My weight  and height were about the same and I was down to 92 pounds at diagnosis.  I was more fortunate, though, as I saw relief from my most extreme gastro symptoms after 3-4 days.  I was still very sick but could hold down food and had no more extreme pain after going gluten-free.  I slowly but steadily got better but it took 6 months before I started  to gain any weight and another 3 years before all my symptoms were gone.  Not to cause you any worry or grief but it will be awhile before she is feeling better.

There must be something else going on besides Celiac for her to still have so much trouble. It can be very common for additional things to be wrong but not anything that can't be found and corrected. If her blood work is coming back better, then she probably isn't ingesting any gluten unknowingly.  I am sorry they have to do a colonoscopy on her as that could cause even more weight loss and I hope they find some answers for you.  Have they checked her gall bladder function?  That can cause severe stomach pain if it is not working correctly and that can happen with Celiac Disease.

The one thing that concerns me is that with all the current foods that are being omitted from her diet, she is not going to gain any weight. I had to eat gluten-free bread and high calorie foods because, like your daughter, my weight was dangerously low. She won't be getting enough calories or vitamins/minerals, as others have suggested. The gluten and dairy definitely need to go (the dairy might be possible after healing) but if soy does not bother her, and if some processed foods do not bother her, then she should eat them. Fats may be a problem for her right now as her gut is so damaged and it took me YEARS to be able to eat fats again without having pain.  That was the worst for me....fats.

I wish you all the best in finding the problem. I feel bad because I know what she is going through......you feel like you will never get better.  Maybe some nice homemade chicken soup?  Broth and chicken with veggies can be so soothing on the gut. Please keep us updated and I really hope this turns around soon for her.

[cyclinglady]

@Gemini

Funny how we all are so different in terms of celiac disease issues.  I have always been able to eat lots of fat and I do not even have a gallbladder.  Go figure!  

[Another PO'ed Celiac]

15 hours ago, cyclinglady said:

That medication can damage your liver!  

It can but they have shown time and time again that the liver bounces right back after the medication is stopped.  I had some severe abdominal pain, cramping, bloating and major pain that went away after 2-3 days on Fluconazole!  I showed visible signs of liver damage in the form of mild jaundice after being on it for 5 weeks, but blood work done since I stopped the medication shows no damage whatsoever.  When you're in that much pain and there's a medication that can help, the risk can be worth it.

The comment about her catching a head cold really makes me suspicious about Candida!  A head cold or flu like symptoms are classic yeast die off and if you've been starving the yeast, that will happen!   

If you are able to see a naturopath, they seem to be a lot more help than gastroenterologists and should have no trouble prescribing fluconazole if there is any evidence of yeast.  Check her skin for rashes, her mouth/throat for white patches, ask her if she's had symptoms of a vaginal yeast infection and there's another strange yeast related symptom that is dryness in the corners of the mouth or chapped lips! 

Another medication to ask about is Xifaxan (sp?).  It's usually prescribed for diarrhea but a 2 week course of it helped me twice, once when I was having problems after my hysterectomy with rebound diarrhea from pain meds and all kinds of tummy issues to 'reboot' my system.  And the other time after a course of strong antibiotics upset my system again but I wasn't having diarrhea, just pain, cramping, bloating etc.  I'm not sure if it might help with candida or just other forms of SIBO, or can do a sort of system reboot, but all I know is that it was like a miracle drug.  Pain and cramping were relieved after just a couple of days on it and I felt like a completely different person.  This was all before my diagnosis of Celiac but those were the only times I've had digestive issues like that.  (For some reason I've never had intestinal problems with gluten specifically.  Only with antibiotics or other medications or something like fructose that sets my system off.  Though I seem to have gradually become lactose intolerant too, but only with milk, like in my lattes, or things like ice cream or yogurt.  Cheese and sour cream etc seem to be ok, so it could have something to do with the amount of actual lactose in something that I have problems with but taking lactaid beforehand prevents issues...at least so far!)

The confusion of what can help and what is the cause of the trouble and what should I take or not take or eat or not eat can be a long frustrating complicated process so I wish you all the best in figuring it out.  I don't know if this info will help or not but I sure hope it does and I can completely sympathize with her!

Oh one more thing I forgot!  Ovarian cysts can actually cause a lot of gastro issues too.  I had a 5 cm one that caused all kinds of strange issues.  It's amazing how something seemingly unrelated can be the cause of so much misery!     

[Another PO'ed Celiac]

I just re-read your original post and I am more convinced than ever that it's Candida.  The rashes and feeling like something is stuck in her throat are both things I have been very familiar with!  Look in her throat with a light and see if you can see any white patches of any kind.  Candida has been seen in some studies to actually bring Celiac on and also make it much worse.  Look up the symptoms of oral thrush and Candida and print them out and take them to a doctor with you if you have to.  I would insist on it, especially if she's had to use any OTC yeast infection treatments lately or as been on antibiotics anytime in the last...oh 16 years or so.  Seriously...there are some of us that yeast just causes misery for!  Especially for those who have the MTHFR gene (like it's highly suspected that I do grrr).  Even just a trial with a few doses of fluconazole are usually enough to prove or disprove the theory with very little risk of liver damage.  (Besides, the liver is one of the most amazing organs we have because of it's ability to regenerate!  Before my weight loss my liver was horribly damaged with what they assumed was fatty liver and out of control liver enzymes...likely made worse by some of the many medications I was on.  But now at 43, losing nearly 150 lbs and even after 5 weeks on fluconazole...it's the picture of health with perfect levels of everything.  They really tried to find some damage from all that fluconazole too..haha!)

Really hope you find a doctor that will listen and help and if they refuse to prescribe it, I would ask them why they think it would be so horrible to give it a small trial when you know of at least one person (me) who it was like a miracle drug for with so many of the same symptoms.  I know there are a lot of docs who don't even believe Candida is a real thing, but all I know is that I experienced the pain and misery it brought on as well as the miraculous relief of it's treatment!

[ironictruth]

I do not have any answers for you but wanted to provide a virtual hug. 

H. Pylori can cause villi blunting too which i know you said she had. 

There are also immune deficiency disorders as well. But two copies of the gene...

People are offering good advice about the time it can take to heal. Additional meds etc may cause more symptoms. 

As you are continuing to investigate, find something to help her reduce stress. Like buy her a pony. 

That was a joke. But seriously, maybe some riding lessons, yoga, whatever. My heart breaks for both of you. 

[Feeneyja]

My daughter has had SIBO.  The gas and belching and bloating were terrible. Probiotics DID NOT help. They made her worse. The standard antibiotics only temporarily helped.  Diet change (SIBO Specific Diet - really reduced fermentable carbs), two months of different herbal antibiotics, daily Atrantil (a supliment created to help treat SIBO), daily Iberogast to increase motility...and now she seems to be clear of it. She is still gluten intolerant, but can eat other starchy or high fiber foods now.  It took 7 months of the above treatment to clear the SIBO and her GI at University of Chicago said for a lot of folks it's a chronic thing you need to stay on top of.

Was she tested for SIBO?  

[Awol cast iron stomach]

I had to go off grains and I'm still healing even now 10 months post gluten challenge test. Yes I'm one who went off gluten prior to testing but my story is sadly a case of numerous missed opportunities that sadly lasted decades. ? I had multiple intolerances pop up. Which is making healing a long , long road.  Corn became my next gluten. 

I removed gluten, corn, and milk. My body as other stated is vitamin d deficient ( I was Vitamin d deficient years prior to my challenge). 

It took me 10 months to find a multi supplement I didn't react to. I could no longer take my probiotic and began making water keifer . 

While this is likely fallout from 4 decades of undiagnosed Celiac ( I was diagnosed IBS for 20 years and have had 8 of the 10 top celiac misdiagnosis before a Dr was willing to test me despite a lifetime of issues)

I hope your daughter feels well soon. I honestly spent months blending my foods. Again the supplemental enzymes tended to cause issues for me due to derivatives in supplements irritating  my other intolerances.

My healing has been slow and an acupuncturist was the one who helped get my gallbladder and pancreas back "online". To be blunt if I tried to eat protein or any fat other than nut butter in a blender in the 4-6 month post gluten challenge . I cried myself to sleep at night as my body struggled to digest . I learned no fat or protein could be handled for quite some time.

I was ever grateful when it those organs "fired" back on a member of the team who tested me said in passing some patients find accupuncture helpful. The accupuncture after several weeks of work got the back on.  I ate steak, mushrooms, and spinach  tonight which back in April I would have not been able to do the steak without a night of regrets, pain, and tears.

Yes my periods get thrown off    my personal opinion and personal observation is gluten knocks my period off line as well. If I get glutened the next period I miss until I can regulate. I noted this during myself induced gluten-free years. 

In my opinion she will get it back. I tend to get very bad cramps when it comes back as if I am a newbie but with a very light flow as my hormones struggle to come back on.

I find all my systems get thrown off by gluten and I just have to wait as they come back each in their own time. I found my body can only delegate so much energy to any given system. So they take their turns. 

It sounds odd in addition to the acupuncturist assessing me , I walk in and tell her what I feel where and that is often the meridian she treats.  A lifetime of symptoms popped up in a flood gate of sequences. So some days my five year old symptoms flare and we treat that other days my early 20 something flare. My body is nostalgic in its recovery. One big memory lane trip to healing.

I decided to stop chasing more diagnosis as to why it's taking me longer to heal than I think or should. Some days I back slide lack of sleep, very busy day, stress etc can cause a slight back slide. I chose to accept that have likely 4 decades of a chronic diseased missed over and over again but that my body is entitled to take its time for working so hard to keep me going all these years when Celiac was very rarely recognized. 

Quite frankly I never got sick enough with all my symptoms simultaneously for someone to test me . They missed my symptoms because they manifested at different intervals various symptoms etc for decades. As I went about the ages and stages of life. 

So while it is very frustrating and one longs to look for what lynch pin is holding up progress it can't just be celiac. In my opinion it can just be celiac and the body has many systems to heal not just the gi small intestine. My experience it's not that simplistic. My small intestine is only a portion there are cells at many levels with me the organism that must heal. Those cells are all dependent on the same resources of nutrients etc.

She will heal it can take some time and frustratingly not on our time.

I commend you and your family for supporting her that is very helpful in the healing process. Sometimes the answer is not more tests or visits, but time and patience.

 

 

[Jadesmom]

On 8/19/2017 at 3:50 PM, Feeneyja said:

My daughter has had SIBO.  The gas and belching and bloating were terrible. Probiotics DID NOT help. They made her worse. The standard antibiotics only temporarily helped.  Diet change (SIBO Specific Diet - really reduced fermentable carbs), two months of different herbal antibiotics, daily Atrantil (a supliment created to help treat SIBO), daily Iberogast to increase motility...and now she seems to be clear of it. She is still gluten intolerant, but can eat other starchy or high fiber foods now.  It took 7 months of the above treatment to clear the SIBO and her GI at University of Chicago said for a lot of folks it's a chronic thing you need to stay on top of.

Was she tested for SIBO?  

Months ago, we saw a Celiac specialist (M.D.) who charges $400 per hour and doesn't take insurance.  She said she wondered if she has SIBO because it can also cause villous atrophy (and maybe not even Celiac given her negative serology) and she put her on VSL3 probiotics.  She took them daily for about 2 months.  It did not help.  She never had a breath test.  I can't seem to find out who tests for this and if I can go through my insurance.  Any suggestions? She has been on autoimmune Paleo for about 2-3 weeks but today we switched to SCD, without the initial bone broth introductory phase.  SCD actually seems less restrictive than Autoimmune Paleo because you can have nuts and some cheeses/dairy.  She feels particularly horrible tonight.  Ugh.  She has developed bad breath and a very bad taste in her mouth.  She says her burps (she burps constantly and it gets really bad after eating) smell like passing gas.  Could SIBO be causing this?  I can't afford to keep seeing the Celic specialist every time I want a test ordered because she charges a fortune.  Her regular pediatric gastroenterologist doesn't do the SIBO breath test, he just treats with antibiotics, meanwhile, my insurance won't pay for Xifaxan.  He did call in Flagyl but after only two pills, her stomach hurt so we stopped.   

[Feeneyja]

My daughter's burping what terrible! We saw a pediatric GI at the University of Chicago. Insurance covered the breath test. We tried flagyl first but my daughter had a bad reaction to it and so the doctor ordered Xifaxin. She had to submit additional information to get it covered, but ultimately it was covered by insurance.

But honestly, the SIBO returned several months later.  I couldn't get an appointment with the same GI doctor because insurance changed who they would refer us to. It would take months to change insurance to get to see the doctor. So,  I did a bunch of research and basically treated her myself. 

I really recommend finding a doc that tests for SIBO. I found that just the SCD was not enough. If it's SIBO (or candida overgrowth,)  you need to reduce the fermentable carbs. There is a book and app called the Fast Tract Diet that worked the best for us. It allows you to calculate the fermentable carbs you are consuming.  If you reduce them far enough, you start to have bacteria die off. That diet, with a combination of herbal antibiotics helped tremendously. The addition of Atrantil (developed specifically to treat SIBO) and Iberogast (to increase motility) has finally allowed her to start to increase her fermentable carbs. It took about 6 months to get there.  By the time we were able to see her GI doc again, she was basically on the mend.  I was told to increase her fermentable  carbs slowly as tolerated, and if symptoms start to return, start her on another herbal antibiotic.  We were also told that we could periodically put her on an herbal antibiotic for a week or so to keep the SIBO at bay.  But the Atrantil she takes daily has really done the trick and so we haven't had to do another round of herbal antibiotics.

But she still cannot have gluten.  It clearly affects her gut and nervous system.  I suspect that it slows transit down allowing for the conditions for bacteria overgrowth.

Something else to note, when you start to have bacteria die off due to treatment, you feel worse.  So sometimes people think the treatment is not working. It's usually within the first three days that the die off reaction starts and can last up to a week.  

It is difficult finding the right doctor. You might want to peruse the website Open Original Shared Link

I know how you are feeling because I went through it with my own daughter.