Desperate help for my 5yr old daughter.

[Ocjmakaveli]

My daughter has had small issues with reflux ever since she was 6 months old. Shes now 5 and shes been taking Ppi medication for almost 5 months now and the doctors havent been really helpful.

 

1st month she wS given omeprazole then 2nd month a twice a day omeprazole which didnt improve her acid reflux at all. I limited my daughters diet by removing all milk related dairy products which helped Little bit.

 

3rd month shes on lansoprazole  and 4 th month shes on 30mg a day of lansoprazole which is twice the normal dosage.  She had an endoscopy done in the 4th month which found nothing abnormal including normal biopsy.

 

5th month my primary care doctor at rush copley refuses to give me referral for an allergist and instead tells me to go to 2nd gastroenterologist which is in their network of rush Copley.  All the allergist are non rush copley.

 

Im going to have her tested out of pocket tomorrow but ive put her on a gluten free diet since 4 days ago as a preemptive measure.

 

Already on day 3 of gluten free is the first time in 5 months she doesnt say her throat feels hot. Shes had a persistent cough for these 5 months which seems to be getting better.

 

Im so desperate to have my daughter be healthy again. She always has a few nighttime coughing fits in which i have to give her tums and wait until she goes to sleep so i can sleep. Its been a horribly difficult 5 months for us but i want to know has anyone else suffered intense acid reflux because of gluten intolerance?

 

My pcp told me there was absolutely no way gluten could cause her reflux and when i asked her then why after 5 months none of her doctors are able to give me a diagnosis she changed the subject. 

 

I typed this quickly so sorry for any errors . I just want to know if anyone has suffered through this before?

[Scott Adams]

Here are some summaries we’ve done on reflux and celiac disease. Their findings are a bit mixed but it’s worth looking at them: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/dyspepsia-acid-reflux-and-celiac-disease/ 

 

[GFinDC]

Hi,

Is her stomach bloated?  If she has gas in her stomach it may force the valve open and let acid enter the esophagus.  She should sleep sitting up to keep the acid low in her stomach.

If she is not eating gluten the celiac tests won't be accurate.  So you should get her to a doctor for celiac tests right away.  It doesn't need to be an allergist to do the celiac test.  Usually a gastroenterologist is the right doctor to go to.  They do antibody tests first and if those are positive then they do an endoscopy to take biopsy samples.  Usually an endoscopy is not scheduled right away so she should keep eating gluten for now.  Even a small amount of gluten is fine, like one slice of wheat bread.  She doesn't need to eat a lot of gluten to keep the antibodies active.

[Ocjmakaveli]

1 hour ago, GFinDC said:

Hi,

Is her stomach bloated?  If she has gas in her stomach it may force the valve open and let acid enter the esophagus.  She should sleep sitting up to keep the acid low in her stomach.

If she is not eating gluten the celiac tests won't be accurate.  So you should get her to a doctor for celiac tests right away.  It doesn't need to be an allergist to do the celiac test.  Usually a gastroenterologist is the right doctor to go to.  They do antibody tests first and if those are positive then they do an endoscopy to take biopsy samples.  Usually an endoscopy is not scheduled right away so she should keep eating gluten for now.  Even a small amount of gluten is fine, like one slice of wheat bread.  She doesn't need to eat a lot of gluten to keep the antibodies active.

I think i mistakenly might have lowered her gluten intake at the wrong time.

 

By the time she had an endoscopy done in the 4th month of reflux she was already on a limited diet of rice, corn,potato, beans, chicken, turkey, grapes, apples, bananas and maybe once a week she would eat bread with strawberry. 

 

Her diet was restricted because of the reflux so the endoscopy came back 100%normal and her gastroenterologist never informed me she should be eating normally before the exam. Actually of the 3 doctors ive seen no one suggested that snd i told them all shes on a restricted diet.

 

Right now shes only officially 100% gluten free for 4 days. Before she might have had some gluten like a cookie or bread snack every now and then but not sure how often.  

 

Thanks for your replies.  She has been dairy free for about 4 months. 

[RMJ]

Tums can cause acid rebound, so although it may give short term relief, it could make things worse in the long run.

[cyclinglady]

I am sorry that your daughter is so ill.  The gluten free diet maybe worth trying.  I would let your doctor know because many doctors will give a celiac disease diagnosis on the basis of improvement while on the diet.  Later, if a firm diagnosis is needed, you can do a gluten challenge (or do it now if youfind a celiac savvy GI who will guide you and supports your celiac disease theory.  

Since this is genetic, look through your family tree to see if others have been diagnosed (most likely not in my opinion) or history of anemia, osteoporosis, type 1 diabetes, thyroid issues and other autoimmune).  

Please research the diet as much as possible.  No eating out until you see improvement.  Our Newbie 101 thread is handy.  Any articles written on celiac.com about diet is useful.  

I agree.  Find the root cause of her GERD.  In my case, it was not related to celiac disease, but instead to autoimmune Gastritis.  But it can be related to celiac disease and would be more common in a child.  

If she does a gluten challenge and gets tested, be sure the complete celiac blood panel is ordered.  Insist on it.  

[Ocjmakaveli]

12 minutes ago, cyclinglady said:

I am sorry that your daughter is so ill.  The gluten free diet maybe worth trying.  I would let your doctor know because many doctors will give a celiac disease diagnosis on the basis of improvement while on the diet.  Later, if a firm diagnosis is needed, you can do a gluten challenge (or do it now if youfind a celiac savvy GI who will guide you and supports your celiac disease theory.  

Since this is genetic, look through your family tree to see if others have been diagnosed (most likely not in my opinion) or history of anemia, osteoporosis, type 1 diabetes, thyroid issues and other autoimmune).  

Please research the diet as much as possible.  No eating out until you see improvement.  Our Newbie 101 thread is handy.  Any articles written on celiac.com about diet is useful.  

I agree.  Find the root cause of her GERD.  In my case, it was not related to celiac disease, but instead to autoimmune Gastritis.  But it can be related to celiac disease and would be more common in a child.  

If she does a gluten challenge and gets tested, be sure the complete celiac blood panel is ordered.  Insist on it.  

I went to see an allergist today and we are starting testing next week of everything possible. I will update this post in order to help others in the future. Thanks for your replies.

[cyclinglady]

5 hours ago, Ocjmakaveli said:

I went to see an allergist today and we are starting testing next week of everything possible. I will update this post in order to help others in the future. Thanks for your replies.

If you are considering celiac disease antibodies testing, know that your daughter has to be consuming gluten daily (1 to 2 slices of bread or equivalent) for 8 to 12 weeks.  It sounds like she might have been gluten light.  Like my kid who lives in a gluten free house.  I had her tested twice.  Each time I made sure she got a daily gluten fix.  Even if she had to sit on the porch munching on a flaky croissant.  

 

[GinaDCG]

On 11/14/2019 at 11:37 PM, Ocjmakaveli said:

My daughter has had small issues with reflux ever since she was 6 months old. Shes now 5 and shes been taking Ppi medication for almost 5 months now and the doctors havent been really helpful.

 

1st month she wS given omeprazole then 2nd month a twice a day omeprazole which didnt improve her acid reflux at all. I limited my daughters diet by removing all milk related dairy products which helped Little bit.

 

3rd month shes on lansoprazole  and 4 th month shes on 30mg a day of lansoprazole which is twice the normal dosage.  She had an endoscopy done in the 4th month which found nothing abnormal including normal biopsy.

 

5th month my primary care doctor at rush copley refuses to give me referral for an allergist and instead tells me to go to 2nd gastroenterologist which is in their network of rush Copley.  All the allergist are non rush copley.

 

Im going to have her tested out of pocket tomorrow but ive put her on a gluten free diet since 4 days ago as a preemptive measure.

 

Already on day 3 of gluten free is the first time in 5 months she doesnt say her throat feels hot. Shes had a persistent cough for these 5 months which seems to be getting better.

 

Im so desperate to have my daughter be healthy again. She always has a few nighttime coughing fits in which i have to give her tums and wait until she goes to sleep so i can sleep. Its been a horribly difficult 5 months for us but i want to know has anyone else suffered intense acid reflux because of gluten intolerance?

 

My pcp told me there was absolutely no way gluten could cause her reflux and when i asked her then why after 5 months none of her doctors are able to give me a diagnosis she changed the subject. 

 

I typed this quickly so sorry for any errors . I just want to know if anyone has suffered through this before?

I am again surprised that some doctors still do not have a good idea about Celiac disease.  I learned long ago (sorry, forgot the source) that Celiac often begins at a young age in the stomach.  Then with age, the symptoms move into the gut.  Gut inflammation from Celiac also produces issues with kidney and uterine inflammation disorders.  

I have Celiac.  And when I was @ 5 years old I had serious tummy pain issues.  I ate Tums a lot.  But they did little for me.  I was also very irregular with bowel issues:  constipation one week and diarrhea the next.  And anemia.  

Good luck! 

[Ocjmakaveli]

6 hours ago, GinaDCG said:

I am again surprised that some doctors still do not have a good idea about Celiac disease.  I learned long ago (sorry, forgot the source) that Celiac often begins at a young age in the stomach.  Then with age, the symptoms move into the gut.  Gut inflammation from Celiac also produces issues with kidney and uterine inflammation disorders.  

I have Celiac.  And when I was @ 5 years old I had serious tummy pain issues.  I ate Tums a lot.  But they did little for me.  I was also very irregular with bowel issues:  constipation one week and diarrhea the next.  And anemia.  

Good luck! 

Wow my daughter has had some anemia issues since birth. Shes always at the 11 range. Diarrhea and constipation her whole life.

 

Since being gluten free for 7 days my daughter had her first night without waking up.  Her appetite improved. Her energy level is up and shes just so much happier lately. 

Ive been doing all my shopping at whole foods and they have a nice selection of gluten free snacks. 

 

Ill keep updating once a week .

 

If anyone is ever in doubt just try the diet a few weeks yourself. Its just amazing how much everything has gluten. 

[cyclinglady]

I am glad she is doing better.  Just know that if she gets tested for celiac disease, her results will most likely be negative since she is on a gluten free diet.  In theory, a celiac can heal in as little as two weeks.  Usually this does not happen, but it can.  

Why get a firm diagnosis?  She will need to be accommodated for school.  She will need a 504 plan to insure her safety.  It might help her to adhere to the diet when other kids are consuming gluten containing foods.  

If she is very ill, work with her doctors and continue the diet.  You may consider a gluten challenge later.  

[Ocjmakaveli]

24 minutes ago, cyclinglady said:

I am glad she is doing better.  Just know that if she gets tested for celiac disease, her results will most likely be negative since she is on a gluten free diet.  In theory, a celiac can heal in as little as two weeks.  Usually this does not happen, but it can.  

Why get a firm diagnosis?  She will need to be accommodated for school.  She will need a 504 plan to insure her safety.  It might help her to adhere to the diet when other kids are consuming gluten containing foods.  

If she is very ill, work with her doctors and continue the diet.  You may consider a gluten challenge later.  

Thanks and will do

[Beverage]

I did not have any intestinal symptoms before I was diagnosed with Celiac's, but I did have that cough, acid reflux, sometimes food would get stuck going down, and severe asthma.  The acid reflux got a ton better when I went gluten free, but the asthma and cough persisted.  I would cough for hours when laying down and trying to sleep.

My traditional doc also prescribed PPI, but I refused to take it, as I knew that with Celiacs, we have vitamin absorbtion issues because of the damage to the upper intestine, and I was still working on some deficiencies. 

And WE NEED ACID to digest our food in order to let the upper intestine absorb those vitamins.  If some other problem, like Celiacs, is causing issues in the intestines, it works up to the stomach, which irritates the hiatal sphincter (causing hiatal hernia), which allows acid and acid fumes up the esophagus, which irritates the throat and lungs.  It's all linked.  Suppressing that acid lets the food ROT instead of digest, further causing problems, more irritation, more fumes, and further preventing vitamin absorbtion.

Some vitamins like D really need acid to utilize them, and I tested low on D.  And low D3 is linked to breathing / asthma issues.  And I did not want to get into the cycle of PPI's where in the long run, the acid leaking problem gets much much worse.

Working with a good naturopath, I found these things worked:

1.  Exercise to drink a glass of WARM water, then with hands over chest, thumb down hard on your heels about 10 times. This helps the stomach, if it has moved a little past that hiatal sphincter, to move back into correct position.  I actually felt something move and had big improvement here, but she may not.

2.  A little spoonful of apple cider vinegar, the natural kind with the "mother" just before eating, added just enough acid where I do not get any acid reflux.  (remember, we need acid to digest).

3.  Deglycyrrhiznated Licorice chewable tablets (Rhizinate by Integrative Therapeutics, available on Amazon) after a meal, and that calmed down any acid reflux until things could heal.  My boyfriend tried them a few times, and they worked for him also.  I do not need this anymore, except once in a blue moon.

4.  After the acid reflux was greatly reduced, I added vitamin K2 to the vitamin D3, to help the D3 absorb.  My asthma went almost completely away, except when I exercise.  And I started feeling a ton better overall.

I went undiagnosed with Celiacs for decades, so there must be some lingering damage as I still get that dry cough sometimes and a little asthma, but overall it is a lot better, miraculous really.   I just hope your daughter doesn't get caught in a downward spiral that I was.

Also, read up on Dr. Jonathan Wright (my first naturopath, radio show Leading Edge Medicine, has written tons of books and is known world wide), and what he has to say about stomach acid.

[Wheatwacked]

On 11/19/2019 at 12:36 PM, Beverage said:

I still get that dry cough sometimes

Lisinopril for high blood pressure gave me a dry cough that kept waking me every two hours and eventually caused an inguinal hernia. Amlodipine also for HBP caused my contact lenses to dry out and I needed to constantly use saline eye drops to maintain my vision. Once off them my vision improved and the cough is gone.

On 11/14/2019 at 11:37 PM, Ocjmakaveli said:

My daughter has had small issues with reflux ever since she was 6 months old. Shes now 5 and shes been taking Ppi medication for almost 5 months now and the doctors havent been really helpful.

In 1976 my son at six months was biopsy diagnosed as Celiac. We still had ulcers back then, no PPI's. It was generally thought that my wife was the problem because she was anxious and wanted to prescribe Valium for her. But she was insistent that something was not right and found a pediatric gastroenterologist who recognized the symptoms and did a biopsy. His prescribed nutrition was only Nutramigen allergen free formula for six months and he recovered nicely. Rather than make him feel different and defective, try getting the whole household to be gluten free for a trial period, you will be surprised. Pay close attention to what vitamins and minerals you are actually ingesting. The Standard American Diet is heavily fortified and Celiac Disease is a disease of malabsorption. Do not get caught up in the "life style changes" mindset. All you are doing is not eating a food that is heavily advertised but is patently not good for you.

This is a partially complete list compiled from NIH documents.

Vitamin	RDA Upper Limit	RDA Male/Female
A (Preformed)	3000 mcg RAE	900/700 mcg RAE
A (betacarotenes)		food sources
B1 (Thiamin)	none	1.2/1.1 mg
B2 (Riboflavin)	none	1.3/1.1 mg
B3 (Niacin)	35 mg	16/14 mg
B5 (Pantothenic Acid)	none	5/5 mg AI
B6	100 mg	1.7/1.5 mg
B7 (Biotin)	none	5/5 mg AI
B8 (Inositol)		not established
B9 Folate	none set	400/400 mcg
B9 Folic Acid	1000 mcg	400/400 mcg
B12	not established	2.4/2.4 mcg
BORON
C	2000 mg
Calcium
Choline	3500 mg	550/425 mg
CHROMIUM	not established	30/20 mcg AI
CHLORIDE
COPPER
D3	4000 iu	600/600 iu
DHEA
E
EPA
IODINE	1,100 mcg	150/150 mcg
IRON	45 mg.	8/18 mg
K
LITHIUM (provisional)	40 mg	1/1 mg
Lutein	not set	not set
LYCOPENE
MAGNESIUM	320 mg	420/320 mg
MANGANESE	11 mg	2.3/1.8 mg
MOLYBDENUM
NICKEL
PHOSPHORUS
POTASSIUM	not set	4700 mg
Zinc	40 mg	11/8 mg
SELENIUM	400 mcg.	55/55 mcg
Silicon
TIN
VANADIUM
Zeaxanthin