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 Celiac.com!
    eNewsletter
    Donate

Plantain Flour


summerteeth

Recommended Posts

summerteeth Enthusiast

I went to this Asian market in my hometown for the first time ever. I saw some plantain flour and asked the cashier about it. He was extremely nice and said that he gets a lot of people asking if it had wheat in it - he said no. I also checked on their website and it says it is gluten free.

So I bought it, but have not even opened it yet. I am hesitant to use it though because I have no idea what it tastes like or what its consistency is.

Has anyone ever used plantain flour before? Any tips??

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Hi I'm probably no help at all but I am very curious. Have you found any recipes that call for the plantain flour? Or were you just planning on using it in your normal recipes? I would make sure to add some xanthan or guar gum to the recipe.

Link to comment
Share on other sites
summerteeth Enthusiast

The only thing I have found is on the box there is a recipe for "fufu" (plantain flour is also known as "fufu flour"). Fufu is a bread commonly served with soup. The box also says it works for breading and thickening gravies/soups

From the company's website:

Preparing Fufu:

Unlike the traditional method of preparing fufu, Tropiway Fufu Flour is very easy to prepare.

Simply add water to flour and stir into a paste in a saucepan.

Place over heat and knead with a wooden spoon.

Check for thickness and consistency. If fufu is too soft while cooking, add some more flour. On the other hand, if it is too stiff add a little bit of water.

I may try this, but I was wondering if there were other options.

Link to comment
Share on other sites
kenlove Rising Star

In the early 1900s banana flour was on of the largest exports from Hawaii, almost equal to sugar and pineapple. It just stopped about 1910 and now we cant find the flour at all. WOuld love to try some of this stuff!

The only thing I have found is on the box there is a recipe for "fufu" (plantain flour is also known as "fufu flour"). Fufu is a bread commonly served with soup. The box also says it works for breading and thickening gravies/soups

From the company's website:

Preparing Fufu:

Unlike the traditional method of preparing fufu, Tropiway Fufu Flour is very easy to prepare.

Simply add water to flour and stir into a paste in a saucepan.

Place over heat and knead with a wooden spoon.

Check for thickness and consistency. If fufu is too soft while cooking, add some more flour. On the other hand, if it is too stiff add a little bit of water.

I may try this, but I was wondering if there were other options.

Link to comment
Share on other sites
mommida Enthusiast

That sounds like like you don't have to add either of the gums for baking then. I will have to find some of this stuff.

Link to comment
Share on other sites
Evie4 Apprentice

Here is my experience with plantain flour...

I've been working with it over the last year. I made a flour mix that is 1 part plantain, 1 part brown rice, 1 part sweet rice and 1 part tapioca. I really like the fine texture it gives muffins. I tried it in banana bread and cranberry nut, but I found them to be too dense and moist. I remade the cranberry nut bread with 1/2 of that blend and 1/2 regular rice flour and that was better. Not at all gritty. I should of however baked it a little longer--the center was still too moist. I used that same combo (1/2 of the blend and 1/2 regular rice flour) in cornbread and that came out really well. Not too dense and not crumbly and dry.

The first time I purchased it I bought it through Barry Farms. They have a recipe for pancakes and I tried it out. Didn't like it. The pancakes reminded me of whole wheat and were dry.

I also have a blend with teff, plaintain, tapioca and something else...I'd have to check. I wanted to try and get more nutritional elements into my flour mix. This mix produces tan colored muffins as you might imagine. But I've had great success in making banana nut, blueberry and raspberry muffins. I didn't try it in my christmas baking as some cookies are meant to be light in color. I think I'll whip up a batch of cocoa drop cookies with this flour tonight and see how it goes!

I think it is very likely true that no gum may be necessary. I'm going to omit it in my loaf (nut breads) next time and see how it turns out.

Link to comment
Share on other sites
kenlove Rising Star

Thanks for info Evie4,

If you feel like posting some recipes, that would be great. I have some green Hawaiian bananas drying now.

You guys got me inspired to make some flour!

Here is my experience with plantain flour...

I've been working with it over the last year. I made a flour mix that is 1 part plantain, 1 part brown rice, 1 part sweet rice and 1 part tapioca. I really like the fine texture it gives muffins. I tried it in banana bread and cranberry nut, but I found them to be too dense and moist. I remade the cranberry nut bread with 1/2 of that blend and 1/2 regular rice flour and that was better. Not at all gritty. I should of however baked it a little longer--the center was still too moist. I used that same combo (1/2 of the blend and 1/2 regular rice flour) in cornbread and that came out really well. Not too dense and not crumbly and dry.

The first time I purchased it I bought it through Barry Farms. They have a recipe for pancakes and I tried it out. Didn't like it. The pancakes reminded me of whole wheat and were dry.

I also have a blend with teff, plaintain, tapioca and something else...I'd have to check. I wanted to try and get more nutritional elements into my flour mix. This mix produces tan colored muffins as you might imagine. But I've had great success in making banana nut, blueberry and raspberry muffins. I didn't try it in my christmas baking as some cookies are meant to be light in color. I think I'll whip up a batch of cocoa drop cookies with this flour tonight and see how it goes!

I think it is very likely true that no gum may be necessary. I'm going to omit it in my loaf (nut breads) next time and see how it turns out.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Evie4 Apprentice
Thanks for info Evie4,

If you feel like posting some recipes, that would be great. I have some green Hawaiian bananas drying now.

You guys got me inspired to make some flour!

Ken, I made these chocolate cookies this evening. I meant to use my teff flour blend...but after a long day of work and cooking dinner...I totally forgot and grabbed my other blend. These cookies taste like a rich nutty chocolate brownie. Totally got the thumbs up from my gluten tolerant husband.

I'm going to try using more plantain and less rice flours (ratios) in the future. I'll try to remember to post if I hit on any promising combos. I also used this flour blend to make spekalatius. I must say, they are quite impressive (if you like that kinda thing). I'll have to write up the recipe as it was adapted from a (gluten) recipe.

Rich Chocolate Nutty Cookie Recipe

In a large bowl mix:

1 3/4 cups flour (blend equal parts plantain, brown rice, sweet rice, tapioca)

1/2 cup cocoa powder

1/2 teaspoon xanthum gum

1/2 teaspoon baking soda

1/2 teaspoon salt

In a small bowl mix:

1 egg

1/3 cup water

1/3 cup butter (I actually use 2:1 expeller coconut oil and ghee)

1 cup sugar (I use organic cane--the tan stuff)

1 teaspoon vanilla

Coarsely chop 1 cup pecans. I Also used pecan half for the top.

Add the premixed wet ingredients to the mixed dry. After thoroughly mixing, add chopped nuts. The dough will be VERY stiff. Scoop with teaspoon into balls about the size of a quarter. You can use your fingers to get it off the spoon onto the cookie sheet. Push pecan half on to dough, smashing it down. I molded the ragged edged with my fingers before baking. Bake for 6-8 minutes at 375 F. Remove from cookie sheet after one minute to cooling rack. I use parchment to bake on--you should be able to bake on ungreased cookie sheet.

Link to comment
Share on other sites
kenlove Rising Star

Thanks a million, this looks really good. I'm not a baker but use the flours for noodles, ravioli,

and gyoza type pot sticker things. Generally use a lot of buckwheat powder I bring back from Japan as I dont have much faith in the purity of the local stuff found here in Hawaii.

That with Tef and mochiko is pretty interesting.

My wife usually does the baking but has never tried spekalatius although does things with fresh ginger and tom sawyer mix flour thats really good.

take care

Ken, I made these chocolate cookies this evening. I meant to use my teff flour blend...but after a long day of work and cooking dinner...I totally forgot and grabbed my other blend. These cookies taste like a rich nutty chocolate brownie. Totally got the thumbs up from my gluten tolerant husband.

I'm going to try using more plantain and less rice flours (ratios) in the future. I'll try to remember to post if I hit on any promising combos. I also used this flour blend to make spekalatius. I must say, they are quite impressive (if you like that kinda thing). I'll have to write up the recipe as it was adapted from a (gluten) recipe.

Rich Chocolate Nutty Cookie Recipe

In a large bowl mix:

1 3/4 cups flour (blend equal parts plantain, brown rice, sweet rice, tapioca)

1/2 cup cocoa powder

1/2 teaspoon xanthum gum

1/2 teaspoon baking soda

1/2 teaspoon salt

In a small bowl mix:

1 egg

1/3 cup water

1/3 cup butter (I actually use 2:1 expeller coconut oil and ghee)

1 cup sugar (I use organic cane--the tan stuff)

1 teaspoon vanilla

Coarsely chop 1 cup pecans. I Also used pecan half for the top.

Add the premixed wet ingredients to the mixed dry. After thoroughly mixing, add chopped nuts. The dough will be VERY stiff. Scoop with teaspoon into balls about the size of a quarter. You can use your fingers to get it off the spoon onto the cookie sheet. Push pecan half on to dough, smashing it down. I molded the ragged edged with my fingers before baking. Bake for 6-8 minutes at 375 F. Remove from cookie sheet after one minute to cooling rack. I use parchment to bake on--you should be able to bake on ungreased cookie sheet.

Link to comment
Share on other sites
summerteeth Enthusiast

Wow- the chocolate cookies sound delicious! I think I will wait until after christmas and do a bit of experimenting in the kitchen. Thanks!!

Link to comment
Share on other sites
Evie4 Apprentice

Thanks a million, this looks really good. I'm not a baker but use the flours for noodles, ravioli,

and gyoza type pot sticker things. Generally use a lot of buckwheat powder I bring back from Japan as I dont have much faith in the purity of the local stuff found here in Hawaii.

That with Tef and mochiko is pretty interesting.

My wife usually does the baking but has never tried spekalatius although does things with fresh ginger and tom sawyer mix flour thats really good.

take care

Ken here is the spekulatius recipe. I wrote it up last night as my husband insists I make them every year from now on. He is calling them Lebkuchen as they are very reminiscint of the very fine Lebkuchen in Germany...not like the "gingerbread" type most Americans are familiar with. I intentionally used more ground almonds than flour mix. Typically spekulatius are a bit more cookie than nutty if that makes sense.

I try to use use 2:1 expeller coconut oil and ghee in all my baking now. Coconut oil is cheaper and some ghee gives that delcious buttery flavor. There's a lot of text to the recipe, I really tried to describe the process as clearly as possible. Also, the recipe called for cardomom, I didn't have it so I put in a little dry ginger. They still came out great. Not sure if the will get hard...in which case I will put a sliver of fresh apple in with them.

Spekulatius

1/2 cup (ghee and expeller coconut oil)

1 1/2 cup almond meal/ground almonds

1 cup brown rice flour

1/4 cup potato starch

1/4 cup tapioca flour

1/4 cup sweet rice flour

1/4 cup plantain flour

1/2 teaspoon xanthum

3/4 cup sugar (I use organic cane)

zest of one lemon

1/2 tsp ground cinnamon

1/4 tsp ground cloves

1/4 tsp nutmeg (freshly grated)

1 egg (beaten with 1/4 tsp water)

sliced almonds (FOR DECORATING)

.

Mix dry ingredients in large bowl.

Mix ghee and coconut oil, add to dry ingredients by dropping small blobs at time into flour mix and stir intermittently. The idea is to create a mix like (cutting in) shortening for a pie crust. Continue mixing so that texture is uniformly crumbly looking.

In a separate bowl, beat the egg and water together. Add egg mixture to dry ingredients. Stir ingredients thoroughly. Continue to mix with your hands. Knead it until it has a uniform appearance. It will be coarse, but it should hold together. Divide dough in half. Form two rectangular flat pieces about 4" x 7" and about

Link to comment
Share on other sites
Evie4 Apprentice

Ken...I miss my potstickers! One of the hardest part of going gluten free was knowing I couldn't go for dim sum anymore. If you have any recipes/tricks to share for making gluten free wrappers and fillings, I would be thrilled to get some! I wouldn't be able to use buckwheat flour as it seems my husband got hives from buckwheat tea the last time he had it.

Link to comment
Share on other sites
kenlove Rising Star

Much of the buckwheat tea I saw has barley in it so I've not had it in years.

Miss it on a hot summer day in Japan.

I usually use buckwheat and quinona flour mix for gyoza.

Usually make vegan ones with figs, feta and spinach.

Sometimes with whole buckwheat or brown rice filling.

I did buy and tree Bobs gluten Free steel cut oats last week so I;m wondering how that will be in a filling.

i'll have to practice again with the banana flour

take care

Ken...I miss my potstickers! One of the hardest part of going gluten free was knowing I couldn't go for dim sum anymore. If you have any recipes/tricks to share for making gluten free wrappers and fillings, I would be thrilled to get some! I wouldn't be able to use buckwheat flour as it seems my husband got hives from buckwheat tea the last time he had it.
Link to comment
Share on other sites
Ahorsesoul Enthusiast

Evie4,

Try this skinless potsticker recipe listed here:

https://www.celiac.com/gluten-free/index.ph...amp;hl=skinless

Link to comment
Share on other sites
Evie4 Apprentice
Evie4,

Try this skinless potsticker recipe listed here:

https://www.celiac.com/gluten-free/index.ph...amp;hl=skinless

Got it! Thanks a bunch! Still looking for a "skin" recipe :D

Link to comment
Share on other sites
Evie4 Apprentice
Much of the buckwheat tea I saw has barley in it so I've not had it in years.

Miss it on a hot summer day in Japan.

I usually use buckwheat and quinona flour mix for gyoza.

Usually make vegan ones with figs, feta and spinach.

Sometimes with whole buckwheat or brown rice filling.

I did buy and tree Bobs gluten Free steel cut oats last week so I;m wondering how that will be in a filling.

i'll have to practice again with the banana flour

take care

Ken, thanks for sharing that. I'm going to let my (Japanese) friend know, we shop together and she reads labels for me at the Asian store!

Link to comment
Share on other sites
kenlove Rising Star

Thats always a good idea.

Try and find Juwari soba4 if your at a Japanese market.

Thats 100% buckwheatr and gluten free and very tasty.

I've had a office in Tokyo for almost 30 years so I get spoiled but what I can get tehre and bring home to Hawaii.

Take care

Ken, thanks for sharing that. I'm going to let my (Japanese) friend know, we shop together and she reads labels for me at the Asian store!
Link to comment
Share on other sites
kenlove Rising Star

Thats always a good idea.

Try and find Juwari soba4 if your at a Japanese market.

Thats 100% buckwheatr and gluten free and very tasty.

I've had a office in Tokyo for almost 30 years so I get spoiled but what I can get tehre and bring home to Hawaii.

Take care

Ken, thanks for sharing that. I'm going to let my (Japanese) friend know, we shop together and she reads labels for me at the Asian store!
Link to comment
Share on other sites
  • 6 months later...
GlutenFreeManna Rising Star

The only thing I have found is on the box there is a recipe for "fufu" (plantain flour is also known as "fufu flour"). Fufu is a bread commonly served with soup. The box also says it works for breading and thickening gravies/soups

From the company's website:

Preparing Fufu:

Unlike the traditional method of preparing fufu, Tropiway Fufu Flour is very easy to prepare.

Simply add water to flour and stir into a paste in a saucepan.

Place over heat and knead with a wooden spoon.

Check for thickness and consistency. If fufu is too soft while cooking, add some more flour. On the other hand, if it is too stiff add a little bit of water.

I may try this, but I was wondering if there were other options.

Hi Summerteeth,

I know this post is really old, but did you ever try making the fufu? I found a flour mix called fufu in my international market today and I started looking for recipes and came across your post here. The fufu flour I saw was made from cocoyam and cassava flour. I found some very interesting info on fufu. Open Original Shared Link Apparently it is used like bread in parts of Africa. I like to make African peanut soup and this sounds like it would be perfect to go with that. Was curious if you used the plantain flour to make fufu or any of these other recipes.

Link to comment
Share on other sites
summerteeth Enthusiast

Hi Summerteeth,

I know this post is really old, but did you ever try making the fufu? I found a flour mix called fufu in my international market today and I started looking for recipes and came across your post here. The fufu flour I saw was made from cocoyam and cassava flour. I found some very interesting info on fufu. Open Original Shared Link Apparently it is used like bread in parts of Africa. I like to make African peanut soup and this sounds like it would be perfect to go with that. Was curious if you used the plantain flour to make fufu or any of these other recipes.

No I haven't... it is still sitting in my pantry. What is your recipe for African peanut soup?

Link to comment
Share on other sites
GlutenFreeManna Rising Star

No I haven't... it is still sitting in my pantry. What is your recipe for African peanut soup?

I don't exactly have a recipe. I make it a little differently each time. The main ingredients that don't change are: chicken, tomato paste (or tomato sauce), peanut butter and some sort of peppers (bell peppers if you don't like it spicy or spicy peppers or even just a shake of red pepper flakes). The tomato sauce and peanut butter with a little heat make such a good flavor for the chicken. From there I add whatever vegetables I have on hand. I have done sweet potatoes, regular potatoes, squash, zucchini, okra, carrots, onions (almost always have onions). Here's a good basic recipe that sound similar to what I have made in the past: Open Original Shared Link

I usually use boneless chicken though and cut it up and let it cook in the stew. I have done it on the stove top or in the crock pot all day and it's good either way. The flavor is even richer the second day. I alway make a big pot of rice to serve with it too. It's a very easy and hearty stew. You could make it vegetarian or with beef as well, but I like chicken the best. Anyway, when I made this in my pre-gluten free days I would serve it over rice or over biscuits. SO I thought this fufu sounded like a traditional biscuit that just happens to be gluten free. I did find in reading about fufu that western cultures have started to add wheat flours (especially semolina) to make their fufu, so I would not trust any finished product when traveling. Always check the ingredients.

Link to comment
Share on other sites
summerteeth Enthusiast

Yum that sounds really good... will definitely have to try it.

I ended up using some of the flour today because I made chicken in my slow cooker and thought that chicken & dumplings sounded good.

This flour is awesome! I am going to have to go back and buy more of it because the dumplings have no discernible "gluten free flour" taste that I seem to get with rice flour. They are a bit more gooey in comparison to the ones my mom used to make (with wheat flour). But all in all they were good, and my non-gluten-free fiance really liked them, too, which is a plus (he's not usually a big fan of gluten-free substitutions, but is always a good sport. I think he is scarred from a particularly disgusting foray with corn pasta).

Link to comment
Share on other sites
GlutenFreeManna Rising Star

Yum that sounds really good... will definitely have to try it.

I ended up using some of the flour today because I made chicken in my slow cooker and thought that chicken & dumplings sounded good.

This flour is awesome! I am going to have to go back and buy more of it because the dumplings have no discernible "gluten free flour" taste that I seem to get with rice flour. They are a bit more gooey in comparison to the ones my mom used to make (with wheat flour). But all in all they were good, and my non-gluten-free fiance really liked them, too, which is a plus (he's not usually a big fan of gluten-free substitutions, but is always a good sport. I think he is scarred from a particularly disgusting foray with corn pasta).

Ooh, that is great to hear that it made good dumplings. I have not found a good dumpling or biscuit and I can't find the gluten-free Biquick in my area yet. Did you just follow the Fufu recipe above and drop them into the chicken mixture or did you use a regular recipe and substitute the plantain flour?

Link to comment
Share on other sites
summerteeth Enthusiast

I followed the recipe on the box of flour - it was 1/2 c of flour and 3/4 c water mixed together & then dropped in the liquid (I had cooked my chicken in the slow cooker and just ladled out some of the liquid into a saucepan because I wasn't sure how it was going to work - in retrospect, I could have just put the dough balls directly into the slow cooker).

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...