Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newbie Healing Diet Questions


Kendall2

Recommended Posts

Kendall2 Newbie

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.

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

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.

Kendall2 Newbie

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?

kareng Grand Master

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.

 

 

Open Original Shared Link

 

 

 

 

Open Original Shared Link

1desperateladysaved Proficient

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

EmiPark210 Contributor

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. 

 

Open Original Shared Link

 

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!

nvsmom Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,103
    • Most Online (within 30 mins)
      7,748

    Judithann
    Newest Member
    Judithann
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TerryinCO
      Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure.
    • Dc91
      Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help 
    • Ryangf
      Hi everyone I’m somewhat new here- at least this is my first time posting.    I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.) 
    • trents
      I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery.  One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
    • Hauama
      I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food? 
×
×
  • Create New...