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Newbie Healing Diet Questions
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8 posts in this topic

Hello,

 

My son was recently diagnosed with gluten intolerance.  He is a young adult and had been having symptoms for about the past year - acid reflux, stomach discomfort diarrhea and occasional nausea. 

 

He has been off gluten for almost two weeks and is feeling much worse than he has since his illness began.  Some days he is okay but most of the time he feels weak and extremely tired.  After reading a lot of posts on this forum, we understand that feeling worse after starting a gluten free diet is normal.  I really appreciate the information here as it has helped to answer a lot of newbie questions.  However, I still have a few more.

 

In order to choose a good diet book so I can prepare the right foods for my son. I've read about the various diets designed to help heal the small intestine GAPS, SCD, BED, Paleo.  I'm suffering from information overload.  Different people seem to do better on different diets.  I was leaning toward the BED diet because it targets yeast overgrowth which might be the cause of Celiac disease.  Then I read that the grains are too hard for many people to digest.  Some people reported healing much better on the GAPS diet.  Others said that it depends on blood type.  We don't know my son's blood type.  His doctor is willing to order a blood test but says that the insurance may not cover it.  Is it important to choose a diet according to blood type?

 

My plan is to order the Gut and Psychology Syndrome book (GAPS) along with the Internal Bliss recipe book to begin with.  Our income is limited so I can't buy every book but I'm open to suggestions.  My son has been eating homemade chicken soup, sauerkraut, and cooked vegetables but says that he feels best when he eats nothing at all.  He doesn't have any trouble tolerating dairy, eggs or corn but doesn't want to eat them for fear of developing more allergies. 

 

I bought some delicious strawberry kefir from Trader Joe's.  Is this a safe food or would it be considered dairy?  Would water kefir be better to start with than milk kefir? I've seen a lot of kefir grains for sale on Amazon.  Any recommendations on which brand to try?  Is it safe to eat plain yogurt with active cultures while healing?  Are bananas, apples or oranges safe to eat or too high in sugar?

 

We have aloe vera juice.  Is this a good thing to take to promote gut healing?  Sorry for the multiple questions and thanks in advance for any advice.

 

 

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Welcome to the board.

I think the diet depends on the person. Some of these diets work better for certain individuals because of their various needs. I personally was not handling lactose well so I gave up lactose containing products. I was having issues with acne so I tried giving up milk completely...and it did improve a bit. I can eat some grains but others can not. Some avoid night shades or corn because it negatively impacts their health.

The problem is that he is so very new to gluten-free eating that his intestines are no where near healed yet and may cause symptoms to hang on for many months. It can be really hardto figure out if another food is causing a problem when the first problem (celiac) isn't fixed yet. You might consider waiting a few months before eliminating other foods besides dairy, which most celiacs have a problem with.

Eating whole foods that can be recognized goes a long way to help. Things like fruits, vegetables and meats are good. gluten-free breads, power bars, or treats aren't great....although I really wish that there was an M&M tree.;)

Best wishes. Oh, and gluten intolerances are often genetic so you might want to get checked out too. If he has any siblings, they could be affected too.

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Welcome to the board.

I think the diet depends on the person. Some of these diets work better for certain individuals because of their various needs. I personally was not handling lactose well so I gave up lactose containing products. I was having issues with acne so I tried giving up milk completely...and it did improve a bit. I can eat some grains but others can not. Some avoid night shades or corn because it negatively impacts their health.

The problem is that he is so very new to gluten-free eating that his intestines are no where near healed yet and may cause symptoms to hang on for many months. It can be really hardto figure out if another food is causing a problem when the first problem (celiac) isn't fixed yet. You might consider waiting a few months before eliminating other foods besides dairy, which most celiacs have a problem with.

Eating whole foods that can be recognized goes a long way to help. Things like fruits, vegetables and meats are good. gluten-free breads, power bars, or treats aren't great....although I really wish that there was an M&M tree. ;)

Best wishes. Oh, and gluten intolerances are often genetic so you might want to get checked out too. If he has any siblings, they could be affected too.

Thank you for your reply, Nvsmom.  I appreciate your support.  We do have four younger children who are symptom-free.  My husband and I have considered having everyone tested but I'm afraid it would be too expensive if not covered by insurance.  I've read that a blood test is only accurate if the intestine has been significantly damaged.  It seems there is  conflicting information about whether a saliva or stool test is the way to go.  I've also read about genetic testing but it seems that would tell us only whether we have the gene that makes gluten intolerance a possibility.  Any suggestions on what type of testing should be done on family members who don't show any symptoms?

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I would suggest you get info from reliable sources so you don't waste money.  Insurance should pay to test all first degree relatives of a person with Celiac.

 

 

http://www.cureceliacdisease.org/?s=relatives

 

 

 

 

http://www.cureceliacdisease.org/?s=stool+samples

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Welcome Kendell!  Nice to meet you.

 

I am about a year into the gluten free experience after suffering at least 30 years with celiac symptoms.  As I see it now there are a couple of ways to approach the diet.  You can either cut out any and all foods that are suspicious or common offenders, or you can go several months only eliminating gluten.  I went for the cut out many angle in hopes that it would be easier then cutting more later.  I also needed to heal as quickly as possible.  All of my physicians conclude that my intolerances to food will improve over the healing process.  Some of the damage is reversible.  However, gluten is never an option.

 

I work with several natural minded doctors.  I asked the Functional Medicine doctor that I work with, about aloe vera for small intestine healing and he thought it might be too astringent.  Nevertheless, I have used small amounts of it.  He did suggest glutamine for intestinal repair, however, if yeast is a problem, they may enjoy the glutamine.  I am taking IgG to help my intestine to heal this was recommended to me by another physician that analyzed my case.  My Functional Medicine team thought it seemed reasonable.  I highly recommend quality supplements to enhance healing and for enhanced nutrient levels.  I like to do a nutrient level test to help determine what supplements are required for your particular case.  I work with a natural minded physician for this.  I couldn't analyze my needs by myself.  One could, but requires more time then this homeschooling mother of 7 could muster.

 

My genetic test, along with my symptoms, were used to diagnose my celiac.  You may be able to tell something about you and your husband's genetics if you have your son tested.  You may need help to analyze this.  I had a good experience with my genetic test and the lab which I used was more then helpful.

 

As I understand the reason to avoid dairy with celiac, the villi in the intestine break a substance which helps to break down milk.  When the villi are too damaged, they cannot produce the substance.  The villi are designed in a way that they can heal!  Once healing takes place, one should be able to consume dairy products again.  I should also say that many on this forum do not have a problem with milk.  Others can tell they do, because they bloat when they consume it.

 

In my opinion, any reaction to a gluten free diet is a good one.  One might feel tired or more energetic, but a change is good and encouraging.  It might be making a difference!   I hope your son does get to feeling better soon, though.  I am very happy that he has his mother to help him in this.

 

If you want to receive the personal message I sent you need to check the upper right hand corner of the screen for an envelope with a 1 or 2 near it.  If you click on it and then scroll down, you should be able to see my message.  I say 2 because I am planning to send one more.

 

Diana

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As someone who has been newly diagnosed as well, my perspective is that you don't have to buy a lot to try to heal. Talk to your son and have him decide what type of track he wants to take with this. It'll help some of the psychological shock of the change. Research things together and as a family so everyone understands and feels included. Pretty much what is needed for healing is whole foods. 

 

http://glutenfreegirl.com/new-to-gluten-free/

 

Read that. Shauna is an amazing writer and pretty much outlines everything you need to take a look at to eliminate all gluten and cook very well. Good luck!

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Thank you for your reply, Nvsmom.  I appreciate your support.  We do have four younger children who are symptom-free.  My husband and I have considered having everyone tested but I'm afraid it would be too expensive if not covered by insurance.  I've read that a blood test is only accurate if the intestine has been significantly damaged.  It seems there is  conflicting information about whether a saliva or stool test is the way to go.  I've also read about genetic testing but it seems that would tell us only whether we have the gene that makes gluten intolerance a possibility.  Any suggestions on what type of testing should be done on family members who don't show any symptoms?

Blood tests are recognized as the most accurate around here. I believe that the medical community does not put much stock in stool or saliva tests.

So your son has a diagnosis of gluten intolerance? It is not often a doctor will give that (in writing) so people can get accommodations made for them in places like college. From what I have heard, an "official" diagnosis is helpful for that.

Did your son get tested for celiac disease? If not, and you feel it could be relevant to know this (it can lead toother autoimmune diseases and problems like deficiencies) the tests you could request are:

TTG IgA and tTTg IgG

DGP IgA and DGP IgG (newer tests that are better at picking up early damage)

Total serum IgA (control test - 5% of celiacs are low in IgA)

EMA IgA (this test is one that sometimes does not show up in new celiac cases)

AGA IgA and AGA IgG (older tests)

If he is not a celiac and has non-celiac gluten intolerance(NCGI) the the blood work will be negative because there is no villi damage. NCGI is much more common and found in approximately 6-30% of the population. celiac disease and NCGI both require a gluten-free diet for life.

Best wishes.

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Hi Kendall2,

 

The advice to stick with whole foods is good. Avoiding spice blends or seasoning mixes is good too.  It's safer to use individual spices.  You could try cutting out dairy for a week and see if it makes any difference.  Lactose intolerance generally causes bloating and diahrea.   There is a possibility of casein intolerance also but most people don't have that.  Sticking with simple foods with not many ingredients is also good.

 

If he hasn't been gluten-free for very long, then it is likely he will be having adjusting symptoms.  It can take a while for the body to adjust to eating gluten-free and the gut bacteria to stabilize.  Avoid sugar can help with that and avoid some bloating.

 

Cross contamination (CC) can also be a problem.  Using the same peanut butter, mayo jar, or butter can spread gluten around.  Shared toasters, colanders, wooden cutting boards can also be a problem.  Vitamin pills can have gluten in them and also medicines.  Even tea can have gluten sometimes.  So anything processed needs to be checked.  It is good to avoid  things with more than 3 ingredients on the nutrition label.  Although that isn't always possible, it's a good goal.

 

Meat and veggies is great way to go.  Nuts and fruits are good too.   But be sure they are safe nuts.  Planters will label for gluten content.

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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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