Jump to content

  • 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

Where Do I Begin?

emsmom

Recommended Posts

emsmom Apprentice
emsmom
Posted

Hi !!

My 5 yr old had a biopsy a month or so ago and that came back neg. Her initial blood test came back post. So here we are GI dr says its not celiac. and wants me to try bio medical feedback for pain wothout even telling us why she is sick all the time they have no answers. She is constanly comp[laining about stomach pain and headaches her belly is almost always swollen, She asks me to make it stop, I don't even no what to do to help her. So dad and I deceided as well as her reg. Pedi to try going gluten-free and see if there is improvment. So here is my question Were do I begin????? She is a fussy eater already but she will eat fruits veggies and some meat are these all ok? do you find any brands are best tasting for kids? please help

I walked around trader joes dumbfounded. any recipes or premade suggestions would be great !! thanks

Also I got the name of a GI dr in Boston do you think I should get A second opinon does anyone know of a good pedi gi in boston-metrowest area?

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

Celiac.com Sponsor (A8-M):


YankeeDB Contributor
YankeeDB
Posted

Hi Emsmom, I suggest going to your local library and looking for general books on Celiac Disease and cookbooks on gluten-free diets. There are lots of good ones! Also, this site and many others have excellent info for you; it may seem overwhelming at first but it gets easier.

The diet is NOT as restrictive as it may seem at first as you can find or make good tasting gluten-free substitutes for almost everything--even bread and cake! Also, online stores like the Gluten-Free Pantry are very helpful--you don't have to scrutinize what you buy there.

I think trying a gluten-free diet for a while might be just the ticket! I really hope Em feels better soon! :)

You might want to get tested yourself if it turns out she responds well to the new diet.

Best wishes!

plantime Contributor
plantime
Posted

A negative biopsy could just mean that someone didn't see the damage. Perhaps the biopsy site is not one affected, or maybe the lab tech didn't think the villi was flattened enough. Go with the positive blood tes, and try being gluten-free. The diet is not as bad as others make it out to be. Just avoid processed foods. Stick to meat, fruit, and veggies, and if you are able, the store listed above is good, and so is the GlutenFree Mall. If you have questions, most of us are happy to answer the ones we know about. Good luck to both of you!

ashlees-mom Rookie
ashlees-mom
Posted

I agree, I think I would do the gluten-free diet at this point. My 4-1/2 yr old has always been pretty picky, but we have found some things she loves. She is eating like a horse now, it is just shocking! We had to take her off dairy for right now, she was having too many GI problems, but we should be able to get her back on it later. That is hardest on her, she loves cheese and yogurt and milk. We have the incredible edible gluten free food for kids by Sheri Sanderson. There are tons of recipes I can try once she can have dairy again, but for now she LOVES the porcupine meatballs. She seems to really crave protein in general, so I also keep deviled eggs on hand (Best Foods Mayo and French's mustard) She also likes the gluten free pretzels and Ortega taco shells (she often eats them like a chip) Fruits and veggies are great, she won't eat veggies really well, so I really like the porcupine meatballs ( they have V8 juice in them). She has regained the 3 pounds she lost in the last couple weeks, and is probably a 1/2 to 1 pound over what she was before she started losing weight. We have had problems with the bread. I think the longer since she has had gluten bread the easier it will be. Once she can have milk in baked goods again we will try some home made breads again. Oh, she also loves the Bob's Red mill pancake mix with Smuckers fruit syrup. (I put a dash of her baby brother's rice cereal in it to add some iron when she isn't looking!) We also have her on Ensure. Watch her vitamins if she takes any (good idea to) Flinstones is what we were using, but they couldn't guartee all ingrediants were gluten-free, so we had to switch. Good luck and let me know if I can help with any more suggestions!

Michelle

Ruth Enthusiast
Ruth
Posted

Hi Emsmom,

I live in the Boston/MetroWest area. My daughter's pediGI doctor is Dr. Glen Furuta of Children's Hospital. He has appointments in Boston and Lexington. We really liked him. My GI doctor is Dr. Crimaldi in Milford, MA. He sees children as well as adults... also very good.

After a year of being gluten-free myself, and 4 months with my daughter gluten-free, I have finally managed to be able to fill my grocery cart at Shaw's (they have a great gluten-free section in the Wild Harvest section of their stores) and their store brand products are listed in the CSA Celiacs Gluten Free Product listing guide.

If you want, I can forward you my weekly shopping list! There are a lot of "mainstream" products your daughter can eat! My daughter is 8. I have to say planning meals for her (outside of the home) is more challenging than myself most days!

Let me know how much info you need!

I found the gluten-free books to be a bit overwhelming at first!

Take Care,

Ruth

zippyten Newbie
zippyten
Posted

Ashlee's Mom,

Hi -- I just wanted to add that if you haven't tried corn bread for your daughter yet she might really enjoy it. There are some good gluten-free mixes on the market, but I also use the regular Indian Head brand available in most supermarkets & use the recipe on the back. I am also lactose intolerant right now so I substitute soy milk (Silk brand) for the milk and it comes out fine. There's some iron and folic acid, etc. in Indian Head so it's got some nutrition...my kids like the corn bread with honey or jam.

Ellen

Cait6799 Rookie
Cait6799
Posted

My daughter's GI doctor is Dr. Nurko at Children's Hospital. Another excellent dr at Children's is Dr. Markowitz, he's a nutiotionist.

Depending on where you live, there is an AWESOME store in Stoneham Mass on Main St that I go to all the time. The Natural Food Exchange. They have all the good stuff that I think every child should have. Chocolate Chip muffins by Kinnikinick, Dinosaur Chicken Nuggets - Wellshire Kids (I have also found these at Bread and Circus), Schar pastas, Schar Breadsticks - the crunchy kind, Enviro Kids Frosted Flakes and Organic Rice bars, TONS of different kinds of cookies and snacks, donuts, Kinikinnick sandwich bread etc..

They also have Gluten free vitamins, skin lotions etc. There is a really great selection of gluten free foods and I love bringing my daughter there because it is all seperated, so when we go in the gluten-free section - everything she looks at she can have. It brings tears to my eyes, to be able to answer that awful question "Can I have that?" with a YES YOU CAN!

Another thing that I have found at Bread and Circus is Heinz Cream of Tomato Soup - it is Gluten Free but you wouldn't know it unless you looked at the fine print where it actually states it. I think they are afraid of scaring off the gluten lovers :P .

Well I hope this helps a little!

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    3. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.