Questions about gluten intolerance/lactose intolerance in children....(LONG)

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Posted 1/31/2013 by cdnstorelady in NSBR Board
 

cdnstorelady
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Posted: 1/31/2013 10:57:39 AM
My DD is 18 and in 1st year university. She has a peanut allergy but otherwise has never had food issues. In September she contracted mono but got over it. She always talked about how the food in the cafeteria made her feel gross/bloated etc. It seemed to start in October and happened sporadically. We were mostly treating it with Phayzme (a gas relief OTC).

In Dece she met with a registered dietician as she had started to notice a connection between dairy foods and feeling sick. The dietician agreed she could have developed lactose intolerance and she should cut it out as much as possible for a few weeks to see if there was improvement. So for a month she drank only Lacteeze milk and otherwise avoided dairy which is hard because she's a huge icecream & yogurt fan.

It seemed to help somewhat but didn't get rid of the problem completely. She went back to school and the problems seemed to get worse. The food service person on campus said they could accomodate lactose intolerance issues but she'd need a doctor's note. Once she made the appointment for the doctor, I suggested she keep the food diary again to show the doctor. After tracking for a few days DD asked if maybe it could be a gluten issue as she was noticing links between bread, crackers, etc and not feeling good.

On Tuesday she saw the doctor who said she didn't think she had Celiac but wanted to rule it out so she gave DD a blood test requesition and told her not to change her diet until after the blood work. DD said they took 4 vials of blood but she wasn't sure exactly what all stuff they were testing for were. When she went yesterday afternoon she was feeling awful - she'd had a piece of toast for breakfast and a sandwich. Dr. gave her a bunch of information on how to do that, plus information about IBS food triggers, etc and said to start that after the blood work.

So at 3:30 am last night, DD calls me from school. She said her stomach was bloated out to about 3 times it's normal size (not sure how she figured that out since her stomach is flat). Any, she had woken up at 1:00 because she was so uncomfortable (not really in severe pain). Went back to sleep and woke again at 3:00. Took 2 Phayzme and by 3:30 wasn't feeling any better so she called me. I told her to call the nurse hotline in our province to see what they recommended.

They told her to take one more phayzyme and if that didn't start helping to go to the ER. It started to subside and this morning she said it's only about half as bad as last night.

So my question is.... did anyone have success with blood work being able to diagnose issues like this or did need to move on to something more invasive? Also, if you are gluten intolerant, are you also lactose intolerant? DH wants to get her into a specialist to "get to the bottom of this"... but that's not how it works here. She'll see the g.p who will do stuff first and then if the g.p. feels she needs to be referred to a GI specialist... well that will take some time... not even sure how much...... Today I'm just one tired mom and feeling helpless to help my DD and her poor tummy.

Montannie
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Posted: 1/31/2013 11:10:17 AM
Sorry your daughter is feeling poorly.

In my case, the doctor took blood and had it tested for the antibodies associated with celiac disease. The results indicated the presence of these antibodies, so I had a biopsy of the small intestine done, which confirmed celiac. The gastro doctor also recommended that I go lactose-free.

If the antibodies are not present, there is still a possibility of gluten intolerance. I recommend you and your daughter spend a little time at Celiac.com reading about gluten-free diets. It's in lots of things other than bread and crackers; it sneaks into salad dressings, barbeque sauce, sausage, candy, etc.


Be not angry that you cannot make others as you wish them to be, since you cannot make yourself as you wish to be. -- Thomas a Kempis



PEArfect
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Posted: 1/31/2013 11:13:25 AM
I'm lactose intolerant and allergic to gluten (not Celiacs.) My gluten allergy started with my stomach bloating, but after a few years it turned into swelling in my stomach, chest, eyes, nose, face, and throat.

I was never tested. I started by eliminating pasta, since I got the worst reaction from it. I noticed a difference right away. The more gluten I eliminated from my diet the better I felt. I've been gluten free for five years. I can definitely tell when accidentally exposed myself to gluten. Like the pp said it is 'hidden' in a lot of foods.

Since they already have her blood work maybe she should start eliminating gluten and see how she feels? Does she have to rely on the school for her meals, or can she make/pack her own?

Btw, Yoplait makes lactose free yogurt and Breyers makes lactose free icecream.


Jen


cdnstorelady
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Posted: 1/31/2013 11:15:56 AM
thanks for the link. My SIL is gluten intolerant (her mother and sis are both Celiac) so we've learned some about it since she started eating GF 4 years ago but I don't know if she had much done in the way of blood testing.

She started eating GF on the recommendation of a naturopath as she had nodules on her thyroid. Well after 3 month of GF eating, the nodules were gone. She uses a lot of different flours for baking, etc rather than just buying GF stuff so I'm sure she'll be able to help us too.

Thanks for the link.

cdnstorelady
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Posted: 1/31/2013 11:21:37 AM
Since they already have her blood work maybe she should start eliminating gluten and see how she feels? Does she have to rely on the school for her meals, or can she make/pack her own?

_____________________________________________________

She started eliminating the gluten yesterday right after the blood work. The Dr. wrote her note for the food service people for both lactose and gluten intolerance. Last night there was stir fry at the cafeteria but they make the GF version to order so hers was really fresh and she quite enjoyed it. She does have food in her room - she's got a mini fridge and keeps almond butter, fruits, lacteeze milk etc...

I asked her if she feels like she knows what her food options are for each meal and she said the info the Dr. gave her was helpful and when they have monthly formal dinners at the cafeteria, there is a gluten free buffet set up that you have to have permission to go to (the dr.s note) so I think she'll be okay eating in the cafeteria now that she got the note, etc. She doesn't need to carry it around but anyone who brings in a Dr. note they meet with cafeteria staff and they know who all the special food kids are - luckily there are only 300 people on campus so that makes it easy for them to address this type of issue.

MrsScrapDiva
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Posted: 1/31/2013 11:22:47 AM
My dh had the bloodwork and then a colonoscopy with a biopsy taken. It confirmed that yes, celiac disease. This was when he was 38 and I think he had signs of it for at least two years. He already had a lactose sensitivity.

My niece (on my dh's side) is only 8 but she has always had an intolerance to dairy. Lactose pills only temporarily worked. And now she has developed signs of celiac (her mom is dh's sister). She is now on a dairy and gluten free diet and feeling much better. It is hard but worth it for overall health. DH's sister is allergic to nuts, beans, soy, lactose intolerant and has celiac.

Keep in mind about what the doctor said about her diet right now. If she is going to have the invasive tests done, they want you to continue with your regular diet for correct diagnosis.

I think they can do a skin test for dairy and food allergies not but not for gluten allergies. I don't know about a correlation between dairy and celiac it sure does seem like a lot of people avoid both.

I hope she is able to get in with a specialist soon and get some answers.

cdnstorelady
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Posted: 1/31/2013 11:29:13 AM
Keep in mind about what the doctor said about her diet right now. If she is going to have the invasive tests done, they want you to continue with your regular diet for correct diagnosis.
__________________________________________________

well, that's what I was thinking but the dr. did tell her to eliminate the gluten after the blood work. I think maybe it's because she really doesn't suspect Celiac.....but if she did need to do that test, would DD have to go back to eaten gluten and feeling crappy for while? I'll try not to think about that until we cross that bridge.

PEArfect
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Posted: 1/31/2013 11:45:55 AM
She wouldn't have to. I didn't. When I first went in my doctor said it sounded like I had a gluten allergy or Celiacs and she suggested I eliminate gluten from my diet. I guess her thinking was why put yourself through all of the tests just to confirm what you could have figured out on your own by eliminating it from your diet. I noticed a difference right away, but I felt really good after about 6 weeks.

To answer the lactose/gluten allergy connection that a pp mentioned my doctor said that it's very common with people that have autoimmune disease.


Jen


bethping
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Posted: 1/31/2013 11:51:42 AM
My son is completely lactose intolerant. I question the phazyme, it's treating the symptom not the problem. I would say, as a non-medial person, to switch to probiotics, which will help to replace the healthy bacteria in her system, especially since she had already been sick with mono, and then the problems have occurred after that. Have her take something like Align or go to a health food store and get something with a lot of live cultures, and take it regularly. She should see improvement with that, and be able to add milk and gluten back into her diet.

FYI, oddly enough, my son can't do lactose free milk, he drinks soy, but can eat lactose free ice cream and Kraft cheese, as many of the packages say it's lactose free - I only learned this recently and it's been life changing for him!

I would have her keep a food and symptom diary.



Bingcherry
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Posted: 1/31/2013 12:17:44 PM
I was diagnosed with Celiac last year after blood work and a colonoscopy with biopsies.
Gluten damages the little villi in the colon which aids digestion. Initially I had to go lactose free as well but was able to reintroduce it after 3 months of no gluten.

So it could be either celiac or a gluten sensitivity/intolerance. I had terrible abdominal pain and bloating for months before I went to the dr.
Don't cut out the gluten before the labs are drawn. It will alter the test results.

Good luck.



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cdnstorelady
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Posted: 1/31/2013 12:17:59 PM
I question the phazyme, it's treating the symptom not the problem.
_______________________________________________

well, we're trying to treat the symptoms while we figure out exactly what the problem is... we're not doing it instead of. This fall when it started happening we thought it was because a lot of the entrees in the cafeteria seemed to have onions in them, (like stir frys and cassaroles) and onion definitely makes me bloated etc...

But then it continued even over Christmas when she was home (we use very little onion in cooking) and it didn't seem to make a lot of difference. She did get some probiotic yogurt this weekend and I'll get her to ask the dietitian about that - I think she's got another appointment in a few weeks. She's still keeping a food diary.

KittenOnTheKeys
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Posted: 1/31/2013 12:50:38 PM
I started feeling better when we put the autistics on the GFCF diet. Rashes cleared up too. I was later diagnosed with a wheat allergy (among other issues here).



Ms. Liz
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Posted: 1/31/2013 2:07:54 PM

Ask the doctor for an IgG blood test for food sensitivities.



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It makes the peas taste funny, But it keeps them on the knife.



fruitysuet
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Posted: 1/31/2013 3:18:30 PM
My doctor didn't take me seriously, just kept saying it was IBS/anxiety. The bloating/pain I was in was awful, way worse than labour. I stopped eating for almost a week and then started nibbling dry biscuits, which just made the pain come back just as bad. From that I determined myself to cut out gluten and I haven't looked back. The difference to my health is incredible. I now rarely have PMS and associated symptoms, migraines, various patches of dry skin have disappeared and so on.

Like someone else said, I don't feel it is worth re-introducing gluten into my diet to get tested when I have figured it out myself, there is no way I am putting myself through that pain again when it's something I am managing well through diet alone.

But you have to be VERY careful with a gluten free diet. It is hidden in so many different things. Things such as barley malt and soy are used in lots of different flavourings.





cdnstorelady
Ancient Ancestor of Pea

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Posted: 2/1/2013 12:57:49 PM
Ask the doctor for an IgG blood test for food sensitivities.
_________________________________________________

This might have been part of the blood work that was just done. DD didn't take a copy of the requisition and I don't think even looked at it.... not that she would know what it meant anyway...so I guess we'll wait for the results of the tests to come back and then DD can ask the dr. They won't answer any questions from me because she's 18.
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