Gluten sensitivity????

[Gussie]

About a month or so ago I posted about my daughter having nausea and vomiting after a stomach virus. Her regular pediatrician said she had classic symptoms of post viral gastroparesis and gave her a few medications to help it. It would get a bit better for a day and then come on as strong the next day. I took her to a pediatric GI doctor as soon as I could get an appointment. The GI doctor was not very compassionate to say the least. Within 5 minutes of the appointment he implied that it was a mental health issue and brought it up at subsequent appointments right in front of her. She was very upset and I was very perturbed. But sticking with him for testing was the fastest way to a diagnosis and we both wanted relief ASAP. She had the following :

1) Gastric emptying scan -completely normal
2) Blood work -completely normal
3) H pylori -negative
4) Endoscopy -looks normal but waiting on biopsy results later this week

During this time I had her start keeping a journal of what she ate/drank, medicine, activity, and a scale of her nausea. For 2 weeks she meticulously kept a record and never had nausea less than a 5 (0 was none, 10 was vomiting).

Last week after the normal looking endoscopy pictures, I was at a complete loss. I went through her journal and found that the only constant in her diet was wheat. I am completely amazed that after 3 days of gluten-free diet, she has not had ANY nausea. My child is back and we are both jumping for joy!

My question is where do we go next? I am obviously not going back to the GI doc after i get the endoscopy biopsies. I think he was so convinced it was mental that he didn't even look at the journal! Should I find another GI, an allergist, or go back to her regular pediatrician for advice?

Thanks yall for any ideas!

 

[BlingDreams]

Personally, I'd look for a more holistic doctor. Unfortunately many mainstream doctors are slow to accept gluten sensitivity as being a real "thing", and only consider it a problem if someone has Crohn's or Celiac disease. You can ask your new doctor for a food sensitivity (IgG) blood test to see if there are other foods that may be playing in to her discomfort; there is some disagreement over the accuracy of the results, but I've found it to be very helpful for many people that I know.

I'm sorry she's suffering, but you are awesome for having figured out the solution so quickly! There are many resources out there for people with gluten sensitivity so I'm sure you'll be just fine

 

[luv2sparkle]

I have lived grain free for over a year. I have not found it to be particularly difficult because after two weeks eating very low carb and sugar free I felt so much better. My joints no longer hurt. Wheat and grains can cause inflammation in a huge number of people and virtually the only way you can discover what it does to your body is by eliminating it. The government has been telling us for years that we need to eat the most of that particular food group but it is not true. Your daughter sounds like she is one of the people that cannot tolerate it. I am so glad you were able to discover the cause yourself. There are a number of substitutes you can make yourself to take the place of bread. I make Fat Head dough that you can make everything from crackers, pizza and breadstick to cinnamon rolls (made with a alternative sweetener). It's made with melted mozzarella and almond flour. You can google and find all kinds of things.

 

[lyra]

My daughter is celiac, and it's something to take seriously. Unfortunately, they require a biopsy to diagnose it. During the pre-biopsy period, the affected person HAS to eat gluten. That was the worst part of all for my daughter, but this was after almost 2 years of trying to narrow things down with every kind of test out there giving inconclusive results. You can have her avoid gluten, but I would want to know for sure. We had no idea what the final answer was until my daughter got the right biopsy from the right doctor. She does also have the genetic factor, a positive HLA B27 gene.

 

[Gussie]

My daughter is celiac, and it's something to take seriously. Unfortunately, they require a biopsy to diagnose it. During the pre-biopsy period, the affected person HAS to eat gluten. That was the worst part of all for my daughter, but this was after almost 2 years of trying to narrow things down with every kind of test out there giving inconclusive results. You can have her avoid gluten, but I would want to know for sure. We had no idea what the final answer was until my daughter got the right biopsy from the right doctor. She does also have the genetic factor, a positive HLA B27 gene.

My daughter had an endoscopy last week before she started the gluten-free diet. We won't get the rules of the biopsies until later this week. After the endoscopy, the doctor said everything "looked" normal but biopsies will show more. That is when I analyzed her journal. Wheat was the only thing that she ate all the time. I decided to have her eliminate wheat and she was better in just 2 days. I suspect she has a sensitivity to gluten and probably not celiac.

I am happy that your daughter was diagnosed correctly and hopefully early. We had gluten-free pasta tonight. Not too bad!

 

[lyra]

Gluten free isn't terrible EXCEPT for any kind of social function. My daughter ends up having to eat salad 90% of the time, and has even been to events where there were no GF options. Gluten can be in so many things other than breads and cereals. We make dinners gluten free. There are acceptable pastas and the macaroni is good. She's found that there is no GF bread that is really worth it. These products are priced ridiculously high. We have GF flour that works in some recipes too, so that holidays are as "normal" as possible for her.

 

[BlingDreams]

She's found that there is no GF bread that is really worth it.

Has she tried Against The Grain? It's the best one I've found, and is even preferred by my son and DH (who both can eat gluten without issue) over regular bread. I've tried their baguettes, rolls, and pizza crust. It is pricey, but it's a great option to have too. It's found in the frozen section in many major grocery stores.

http://againstthegraingourmet.com/

 

[alene]

My son has a gluten sensitivity. He was sick every day for about six months, stomach aches, nausea, headaches. His blood test came back with highly elevated IgA antibodies, but none of the specific celiac tests were positive. Endoscopy was completely normal too. It was his GI who encouraged us to try the gluten free diet since elimination is the only way to know whether gluten is an issue. He was well within a week and has been for months now. It’s really been a learning curve for us, I’d never realized how ubiquitous gluten is until I had to make sure he wasn’t getting it. My suggestion would be to find another GI, gluten sensitivity is really a pretty mainstream diagnosis at this point that a good GI should be able to diagnose and competenty treat. If you want to make sure, you may need to try adding gluten back to see if her symptoms come back. Out GI thinks we should give it a try in a few months, but every time we slip up even a little, his symptoms come back immediately, so I’m not sure I’m going to need to go through with that experiment

 

[Gussie]

@alene thanks for sharing. I am so glad your son is better. I was astonished at how fast her symptoms went away after eliminating gluten. No way would I ask her to test it for a while, lol! This GI doctor she has gone to is a real jerk. I only stuck with him to see test results quickly. I am going to ask her pediatrician to refer us to TX children's hospital. They require referral because that is where the best doctors are. But at this point, I am convinced the proof is in the gluten-free pudding!

 

[TooPatient]

Has she tried Against The Grain? It's the best one I've found, and is even preferred by my son and DH (who both can eat gluten without issue) over regular bread. I've tried their baguettes, rolls, and pizza crust. It is pricey, but it's a great option to have too. It's found in the frozen section in many major grocery stores.

http://againstthegraingourmet.com/

Against the Grain is yummy!

Another pizza option that is pretty good is Caulipower. Lots fewer calories and less fat.

 

[TooPatient]

I found that I get serious heartburn when I eat wheat. My doctor said (since other testing had come back normal) to just wait eating wheat. Definitely check with someone to be sure it is just a sensitivity, but it is actually pretty okay skipping wheat most of the time.

Fat Burger and Wibbley's Burger both have good GF buns. I don't miss sandwiches as I find I like the sandwich fillings on a bed of lettuce better than a regireg sandwich anyway. Corn tortillas (and white corn) can replace regular flour tortillas for yummy burritos. Caulipower or Against the Grain frozen pizzas are good. Papa Murphy's has a good GF option for take and bake pizzas. Many places are also offering fresh baked GF pizza options. Manini's GF pasta was good. Three Bridges GF filled past is pretty okay. Plus lots of others. One of my favorite (and low cost) options is rice sticks (think like for pad Thai).

Out and about... A little tougher, but many restaurants here have GF sections of the menu. Steak, veggies, etc are pretty easy that way too. I usually have no trouble finding several good options at any place. As to social gatherings, most people around here (at least in my experience) have at least a few GF dishes plus salad so it is usually not much of an issue. Potluck events are even better as that lets me bring a couple of GF dishes to share plus there are usually several others. When appropriate, I ask the hostess if I may bring anything (I always offered before as that is how it is done here). She usually suggests dessert or something so that can open up a couple of known GF options too.

 

[Gussie]

Thanks for the ideas yall. This will take some getting used to but I am just thrilled she's feeling better. She's just a kid (11) so I got her a few different gf cookies and snacks, lol.

 

[2Neesers]

I’m sorry the doctor was so rude. I have Celiac and have dealt with that myself. Before I was diagnosed, I was told that my various illnesses were caused by stress and anxiety. I was actually stressed and anxious because I was sick .
Since you have linked her nausea to gluten, it might be a good idea to call the doctors office and ask them to run the Celiac blood test panel if they haven’t already. The phone nurse should be able to do that for you. Since she has only been gluten free for 3 days, she should still have the antibodies in her system that it test for. She would just need to have the blood work done right away.
If she does have Celiac and not gluten sensitivity, you will want to know. Celiac can lead to many other health issues, so she would need to be very careful about cross contamination and sticking to the diet.
Make sure you get the biopsy results and read them yourself too. I have heard of people having positive biopsies and not finding out until years later when they got their medical records to switch doctors because they were still sick.
I’m so glad she is feeling so much better now
There is an excellent forum for celiac and gluten sensitivity that was a life saver for me when I was first diagnosed. They are very helpful and friendly, just like here on Pricescope.
Here’s a link if you’re interested https://www.celiac.com/forums/

 

[TooPatient]

Thanks for the ideas yall. This will take some getting used to but I am just thrilled she's feeling better. She's just a kid (11) so I got her a few different gf cookies and snacks, lol.

One upside... Flourless chocolate cake. So yummy!
Almond flour cookies, puddings, poached fruits with ice cream...

Spiralized veggie "pastas" and so many other great options. Use a thermos for lunch to do hot soups, stews, and various other tagines and the such. She'll be eating far yummier stuff than her friends and won't miss the wheat as much.

The hard part for me is still seeing others eat my favorite stuff. Fresh baked cinnamon rolls, fresh stuffing on Thanksgiving, carrot cake...

You can help a lot by finding delicious GF options for all to enjoy (or at least so good she doesn't miss while others are eating!). Pecan pie (pumpkin, etc) minus the crust (bake in ramekins), apple crisp in place of pie, rice pudding instead of bread pudding. You can also find recipes with minimal flour and swap in almond meal or other substitutes.

 

[PintoBean]

Don't forget rice noodles are a great option! OMG I could eat pho every day!!!! And ho fun (not a sex thing - - wide rice noodles!)

One thing I learned from my friend is that she had to become mindful of gluten being in non food products like lipstick and shampoo. She'd get that telltale migraine and be perplexed by what she had ingested to later learn it was a favorite shampoo or lipstick that she now had to abandon. (She's got celiacs, vasculitis, lupus, etc... I can't keep up it's bad and it took a few decades before she had a handle on what was going on... between doctors at Hopkins, Northwell and Columbia... peeling the onion...)

 

[missy]

@ceg , I am sorry you and your DD had to experience rude healthcare professionals but so relieved and happy for you to find the root of her symptoms and can now take steps to bring her total relief. What a huge relief!

It can be challenging to eliminate gluten entirely I agree especially when at social functions and from common everyday household products. But knowing is most of the battle especially since you can avoid gluten. And after time it will become second nature to her (and I suspect for your whole family too as my guess is you will keep a gluten free household). Good luck and congratulations! Medical mystery solved!


To answer your first question there are functional/integrative medicine gastroenterologists out there who practice in a more holistic way. I would try finding one of them to be a partner with you in your DD's healthcare. Good luck!

 

[lyra]

We don't have all the products mentioned here in Canada. What we do have is stupidly expensive. Easier to make our own versions (except for bread). Don't forget that chicken stock and beef stock usually contain gluten. There are simple things we use that have to be GF.

 

[MaisOuiMadame]

@ceg, glas to hear your daughter is better!! And she's so lucky that you were persistent and figured this out.
I've had three cases similar to yours in my circle of friends and it was the mom who pieced together the evidence every single time.
I agree with others, that kids get this figured out very fast and very well. I'm always amazed how well they handle their nutritional restrictions. They know they'll feel the consequences (nausea, pain) and act accordingly.
Just be careful of other adults. It's typical that they don't take the condition seriously and especially older folks who see this as a fad try to coax them into "treats". Makes me so angry every time!!

 

[TooPatient]

@ceg, glas to hear your daughter is better!! And she's so lucky that you were persistent and figured this out.
I've had three cases similar to yours in my circle of friends and it was the mom who pieced together the evidence every single time.
I agree with others, that kids get this figured out very fast and very well. I'm always amazed how well they handle their nutritional restrictions. They know they'll feel the consequences (nausea, pain) and act accordingly.
Just be careful of other adults. It's typical that they don't take the condition seriously and especially older folks who see this as a fad try to coax them into "treats". Makes me so angry every time!!

True. So frustrating. People who have allergies or at least friends with allergies are generally far more supportive. Others range from trying to be supportive to just flat out annoyed because you "choose" to not eat stuff. I have heard people talking about how they got someone to eat something they "couldn't" by just not saying it was in there. (People like that aren't friends!) Just because the person didn't drop dead on site, they thought that proved it was just a choice. Some people are really not understanding of stuff! I have one friend who brings his own food when invited to gatherings because his reaction is strong enough he can't risk even a trace amount. I had thought it was a bit over kill but respected his choice until I heard some of those conversations while we were out at different places.

 

[lyra]

@kipari , I know my daughter has been what we call "glutened" by accident many times. And it does bother her how people initially treat it like it's just a fad. People can be outright rude. My daughter is an adult btw, she handles this on her own. @ceg , a separate butter/margarine dish is a good idea too. Keeps any gluten out of it for your daughter.

 

[MaisOuiMadame]

I have heard people talking about how they got someone to eat something they "couldn't" by just not saying it was in there.

OMG, this is seriously troubling. How stupid and ignorant can one be??

I know my daughter has been what we call "glutened" by accident many times.

I think I'll steal that expression for my friend's son!
I'm sorry your daughter is dealing with this!

 

[rocks]

Gluten free isn't terrible EXCEPT for any kind of social function. My daughter ends up having to eat salad 90% of the time, and has even been to events where there were no GF options. Gluten can be in so many things other than breads and cereals. We make dinners gluten free. There are acceptable pastas and the macaroni is good. She's found that there is no GF bread that is really worth it. These products are priced ridiculously high. We have GF flour that works in some recipes too, so that holidays are as "normal" as possible for her.

Have you tried udi's gluten free bread? They have afew varieties that are pretty good; the rolls...not so much. Toasted, the bread is terrific.

We also like "food should taste good" products. I believe they are all gluten free.

 

[House Cat]

The GI Specialist IS testing for Celiac, right?

OMG, btdt where I assumed GI Specialists were taking care of my kid and screwed up so royally. Don’t assume. I would make sure while they still have samples in hand that they are testing for Celiac.

Let us know how it goes!

Pinterest is such a good place for gluten free recipes. Search Terms: gluten free, paleo, and whole30.

I’m so happy your daughter is feeling better!

 

[Gussie]

The antibody test was negative as were the allergen blood tests. The endoscopy biopsies will also test for celiac. I am pretty sure she is gluten sensitive, not allergic or celiac, thank goodness. I will let y'all know! Thanks for all your support and input!