Refractory Sprue, Not Getting Better After 6 Yrs Of gluten-free....

[momof6incfl]

Hi everyone,Im Lynne,42,stay at home, homeschooling mom of 6 kids all of us with crs eliac. Ive been 100%gluten-free for 6 yrs increased and am still so sick. Now Ive got crohns,mic.colitis,ileitis,gastritis,endometriosis,steroid induced diabetes,and a few other autoimmune diseases,enlarged liver,spleen,pancreas too. Im going to see another specialist,Ive got Refractory sprue, mosaic patterns, villi are growing back, damage is in jejunal area, increased intraepithelial lymphocytes and Im extremely anemic. level was supposed to be over l00 and mine is l6, everything is dangerously low except platelets which are too high. Does any of this sound familiar to anyone here at all? Im afraid this is turning to intestinal lymphoma and want to know what to ask the next specialist. Ive been told he can get into the jejunal area which most doctors have not been able to do properly. I just want to get better and take care of my kids better than just surviving another day, I want to have fun with them again and not be in the bathroom all day long!

I just got home from the hospital after a week. I went in the 4th. My stomach

pain got severe and the bleeding didnt stop either, it had been a month. As soon

as I got there I

threw up what looked like coffee grounds then, this is really gross, stool,

green mucosy, I had d. so bad and there was no doubt. I even showed the nurse

but she really thought it was d. that I did not throw that up. I did see the

ob the 3rd and after an exam said she would do a cauterization and see how that

went for 2 months before resorting to a hysterectomy. It was the right side of

my stomach that hurt so badly. My gp thought it could be kidney stones because

for about 8 months I keep showing trace of blood in the urine, he sent me for a

ct scan. I had another one in the hospital and that showed a large ovarian cyst

and lots of inflammation in the uterus. On Wed. I had 2 surgeries at once, the

cauterization, d&c, and endometrial ablation, hysteroscopy. I stopped bleeding

finally. If this doesnt work I need to have a complete hysterectomy. Somehow I

think the bleeding and diarrhea are connected, I also show

blood in the stool too. What would make one vomit stool?? It only happened once

but it was enough to let me know something definately isnt right. My stomach

isnt emptying properly but I need a name for

it so Ican figure out what to ask the gastro on Mon. morning. Im super low in

lots

of things, especially potassium and magnesium, which explains the charlie horses

and chest pain. I would get virtigo a lot in the hospital, I dont now that Im

running all over and after my gang though, no time I guess! It doesnt fit in the

schedule. My levels kept dropping down to an 8.2, they didnt check it Friday,

if it went to an 8 I had to have a blood transfusion, I did get iron

transfusions and B12 while in the hospital and I will be seeing a hematologist

also and it looks like that

will be a long term thing because of the complications.! The poor

kitchen staff, they had to refrain from latex also. They were really good to me

and I had my own room. Coming home to my husband who had the flu and one of my

6 kids, meant I had to make up for not being here for a week, so needless to

say, I am extemely sore and worn out now. I see the gastro and gp on Mon. Ive

got to find out about remicade and possibly getting ahome health aid to come in

since Im the caregiver for my kids with special needs too. We've all been gluten

free for almost 7 years now, I follow a really strict diet and have lots of food

allergies in addition so Iam meticulous about ingredients. It seems rice cakes

are the worst, within 30 seconds it goes right through me. It doesnt make sense.

I drink lots of water and eat very healthy. I had 2 t.i.a's last year from the

diabetes being so out of whack which is caused from the steroids.

My gastro is really good and goes to Europe for conferences regarding celiac &

crohns and Ive been to the Mayo & Shands and many drs inbetween. He doesnt

think I have Gastroparesis because my stomach empties too fast, within 30

seconds of eating a rice cake while in the hospital. Im really allergic to eggs

so I dont know what they would substitute with the test. Im also allergic to

iodine and super allergic to melon and latex too, even peas give me hives. He

thinks there could be an ulcer or something else going on but wants to do an

upper endoscopy and consult with another celiac specialist from Shands. He says

the crohns is secondary and is mild to moderate but the damage I have is in the

jejunum area from not knowing I have celiac til 6 years ago. Ive been 100%

gluten free since. Im wondering if I could have Pernicious Anemia since Im so

anemic and low in B12 also, I got a shot in the hospital and also iron by iv and

constant ivs for potassium, magnesium. It really scares me to have to see the

hematologist and get blood transfusions and more iv's on a regular basis. I

started bleeding again though and I know its from running around and cleaning up

after all my kids. I think somehow the two are related. I havent thrown up

anymore black or green stuff so that is a good thing but I still have a lot of

diarrhea and stomach pain. My sugars are staying under 200 and Im not taking the

insulin anymore since I kept crashing to 30. If you have any suggestions please

send them this way. Thanks everyone. Lynne

If anyone has any

suggestions, please send them this way.I know this is complicated and long, but

Im really hoping someone has some suggestions and can relate.

Thank you for helping me. Lynne momof6incfl@yahoo.com

[bear6954]

Hi everyone,Im Lynne,42,stay at home, homeschooling mom of 6 kids all of us with crs eliac. Ive been 100%gluten-free for 6 yrs increased and am still so sick. Now Ive got crohns,mic.colitis,ileitis,gastritis,endometriosis,steroid induced diabetes,and a few other autoimmune diseases,enlarged liver,spleen,pancreas too. Im going to see another specialist,Ive got Refractory sprue, mosaic patterns, villi are growing back, damage is in jejunal area, increased intraepithelial lymphocytes and Im extremely anemic. level was supposed to be over l00 and mine is l6, everything is dangerously low except platelets which are too high. Does any of this sound familiar to anyone here at all? Im afraid this is turning to intestinal lymphoma and want to know what to ask the next specialist. Ive been told he can get into the jejunal area which most doctors have not been able to do properly. I just want to get better and take care of my kids better than just surviving another day, I want to have fun with them again and not be in the bathroom all day long!

I just got home from the hospital after a week. I went in the 4th. My stomach

pain got severe and the bleeding didnt stop either, it had been a month. As soon

as I got there I

threw up what looked like coffee grounds then, this is really gross, stool,

green mucosy, I had d. so bad and there was no doubt. I even showed the nurse

but she really thought it was d. that I did not throw that up. I did see the

ob the 3rd and after an exam said she would do a cauterization and see how that

went for 2 months before resorting to a hysterectomy. It was the right side of

my stomach that hurt so badly. My gp thought it could be kidney stones because

for about 8 months I keep showing trace of blood in the urine, he sent me for a

ct scan. I had another one in the hospital and that showed a large ovarian cyst

and lots of inflammation in the uterus. On Wed. I had 2 surgeries at once, the

cauterization, d&c, and endometrial ablation, hysteroscopy. I stopped bleeding

finally. If this doesnt work I need to have a complete hysterectomy. Somehow I

think the bleeding and diarrhea are connected, I also show

blood in the stool too. What would make one vomit stool?? It only happened once

but it was enough to let me know something definately isnt right. My stomach

isnt emptying properly but I need a name for

it so Ican figure out what to ask the gastro on Mon. morning. Im super low in

lots

of things, especially potassium and magnesium, which explains the charlie horses

and chest pain. I would get virtigo a lot in the hospital, I dont now that Im

running all over and after my gang though, no time I guess! It doesnt fit in the

schedule. My levels kept dropping down to an 8.2, they didnt check it Friday,

if it went to an 8 I had to have a blood transfusion, I did get iron

transfusions and B12 while in the hospital and I will be seeing a hematologist

also and it looks like that

will be a long term thing because of the complications.! The poor

kitchen staff, they had to refrain from latex also. They were really good to me

and I had my own room. Coming home to my husband who had the flu and one of my

6 kids, meant I had to make up for not being here for a week, so needless to

say, I am extemely sore and worn out now. I see the gastro and gp on Mon. Ive

got to find out about remicade and possibly getting ahome health aid to come in

since Im the caregiver for my kids with special needs too. We've all been gluten

free for almost 7 years now, I follow a really strict diet and have lots of food

allergies in addition so Iam meticulous about ingredients. It seems rice cakes

are the worst, within 30 seconds it goes right through me. It doesnt make sense.

I drink lots of water and eat very healthy. I had 2 t.i.a's last year from the

diabetes being so out of whack which is caused from the steroids.

My gastro is really good and goes to Europe for conferences regarding celiac &

crohns and Ive been to the Mayo & Shands and many drs inbetween. He doesnt

think I have Gastroparesis because my stomach empties too fast, within 30

seconds of eating a rice cake while in the hospital. Im really allergic to eggs

so I dont know what they would substitute with the test. Im also allergic to

iodine and super allergic to melon and latex too, even peas give me hives. He

thinks there could be an ulcer or something else going on but wants to do an

upper endoscopy and consult with another celiac specialist from Shands. He says

the crohns is secondary and is mild to moderate but the damage I have is in the

jejunum area from not knowing I have celiac til 6 years ago. Ive been 100%

gluten free since. Im wondering if I could have Pernicious Anemia since Im so

anemic and low in B12 also, I got a shot in the hospital and also iron by iv and

constant ivs for potassium, magnesium. It really scares me to have to see the

hematologist and get blood transfusions and more iv's on a regular basis. I

started bleeding again though and I know its from running around and cleaning up

after all my kids. I think somehow the two are related. I havent thrown up

anymore black or green stuff so that is a good thing but I still have a lot of

diarrhea and stomach pain. My sugars are staying under 200 and Im not taking the

insulin anymore since I kept crashing to 30. If you have any suggestions please

send them this way. Thanks everyone. Lynne

If anyone has any

suggestions, please send them this way.I know this is complicated and long, but

Im really hoping someone has some suggestions and can relate.

Thank you for helping me. Lynne momof6incfl@yahoo.com

When you can find time google glycogen storage diseases - its a metabolic disorder.

[Roda]

I definately would have the EGD done to look for an ulcer in your stomach. Coffee ground emesis (vomit) is not normal and usually indicates bleeding somewhere.

[ravenwoodglass]

What meds have are you taking? With the issues you are having I would imagine they have you on quite a few. Have those meds been checked with the company that makes them to make sure they are gluten-free? Are any of them generic? Generic drugs can change binders at will. Also have you deglutened your house? Are you the only one on the diet? Are you feeding the family gluten? If the house is not gluten-free, including any pet foods you may be reglutening yourself daily through cross contamination. What kind of rice cakes are you eating? I hope they aren't Quaker rice cakes, those are not safe. I hope you are able to get to the bottom of this soon.

[momof6incfl]

What meds have are you taking? With the issues you are having I would imagine they have you on quite a few. Have those meds been checked with the company that makes them to make sure they are gluten-free? Are any of them generic? Generic drugs can change binders at will. Also have you deglutened your house? Are you the only one on the diet? Are you feeding the family gluten? If the house is not gluten-free, including any pet foods you may be reglutening yourself daily through cross contamination. What kind of rice cakes are you eating? I hope they aren't Quaker rice cakes, those are not safe. I hope you are able to get to the bottom of this soon.

No gluten in our house, not cosmetics,toiletries,theres some in the catfood and birdfood but it stays outside as do those animals too, which the kids feed and wash their hands outside before coming inside. My meds are all verified gluten-free by the companies that make them.l call everyone and then let the pharmacy know what starches are used. My list of meds is long, I am not using the insulins right now unless my level is near 300. Here goes: Advair, Novolog, Humulin, Prednisolne, Metformin, Lomotil, Citalopram, Prevacid, Celebrex,Lyrica, Zantac,Calcitriol,Singulair, Ambien, Actonel, Hydrocodone, Reglan,Fioricet, In the ER IV Dilaudid,Iron,Fluids,Reglan.

Rice cares are Store brand,just rice. We're having chipped beef gravy for breakfast this morning, we use non dairy coffee creamer, cornstarch,homemade biscuits from my own flours and the chipped beef is labeled gluten-free. Its an easy meal, inexpensive, and feeds my whole family lf 8 easily.

Any suggestions for what tests to request/what to look for for the next gastro? He can get intothe jejunal area and Shands didnt get to sleep,it was awful, the tube being jammed down my throat . I woke up during the colonoscopy too and that was 5 years ago. They dont have an anesthesiologist. I wont go back there. They even disagreed that I even had celiac because I didnt look it. They didnt go far enough and I had to do another test the next week. Im getting worried that Ive been sick for so long, that more and more damage is being done and turning to cancer. I had pet scans and they showed 5 areas that were hot spots. Im not being paranoid. I really do stick to the diet, stay at home, no chemicals in our house at all. We dont go out to eat at all. Latex allergy kinda keeps us more limited than the celiac. Thank you for helping me. Lynne

[ravenwoodglass]

No gluten in our house, not cosmetics,toiletries,theres some in the catfood and birdfood but it stays outside as do those animals too, which the kids feed and wash their hands outside before coming inside. My meds are all verified gluten-free by the companies that make them.l call everyone and then let the pharmacy know what starches are used. My list of meds is long, I am not using the insulins right now unless my level is near 300. Here goes: Advair, Novolog, Humulin, Prednisolne, Metformin, Lomotil, Citalopram, Prevacid, Celebrex,Lyrica, Zantac,Calcitriol,Singulair, Ambien, Actonel, Hydrocodone, Reglan,Fioricet, In the ER IV Dilaudid,Iron,Fluids,Reglan.

Rice cares are Store brand,just rice. We're having chipped beef gravy for breakfast this morning, we use non dairy coffee creamer, cornstarch,homemade biscuits from my own flours and the chipped beef is labeled gluten-free. Its an easy meal, inexpensive, and feeds my whole family lf 8 easily.

Any suggestions for what tests to request/what to look for for the next gastro? He can get intothe jejunal area and Shands didnt get to sleep,it was awful, the tube being jammed down my throat . I woke up during the colonoscopy too and that was 5 years ago. They dont have an anesthesiologist. I wont go back there. They even disagreed that I even had celiac because I didnt look it. They didnt go far enough and I had to do another test the next week. Im getting worried that Ive been sick for so long, that more and more damage is being done and turning to cancer. I had pet scans and they showed 5 areas that were hot spots. Im not being paranoid. I really do stick to the diet, stay at home, no chemicals in our house at all. We dont go out to eat at all. Latex allergy kinda keeps us more limited than the celiac. Thank you for helping me. Lynne

I would be worried also under your circumstances. I don't think your being paranoid at all. The fact that your villi are growing back is good and an indication of how well your doing on the diet. You have quite a list of meds that your on and hopefully all your doctors are well aware of them and the side effects and any combined reactions that can result. I am glad you are getting back to the doctor and I do hope that they are able to get to the bottom of things soon. I do wish I could be more helpful. I also hope they are able to get you a home health aide soon to take a bit of the pressure off.

[weluvgators]

Hi, Lynne!

Lots of HUGS, Mama!! I struggle to feed my family with three very young, very sensitive kiddos. And, I am quite sensitive myself. We have been at this for a while now, and I still find that gluten cross contamination ends up in my home. Sometimes it is simply from other people coming into my home to help us. And, it is absolutely amazing how prevalent gluten cross contamination is in our food chain. We continue to have lingering issues, as long as we eat out of packages. I now view packages as known sources of gluten consumption, and I budget them accordingly. I have aspirations of being package free, but with a 19 mo, just turned 4 yo, and a 5.5 yo . . . well, it doesn't seem that it will happen soon. I just wanted to share our perspective on ANY packaged food to help you gain perspective on where you may still be getting some lingering gluten. We would not consider having ANY gluten in our pet foods . . . and that is a primary reason that we have not looked more seriously at having pets in our home right now. We are simply THAT sensitive, and I am starting to understand that I am THAT sick.

I wish that I could come help you. Understanding our celiac status has definitely put a halt to having more children . . . I can't handle it!! Have you considered trying to find someone to come in and help take care of some of the household stuff? We have had pretty good luck with mother's helpers, but they must follow our gluten free protocols. You need to be supported, and I understand how difficult that can be!

Have you looked at the University of Maryland Center for Celiac Research? I recently heard Dr. Fasano speak, and it was amazing. I hope that you can figure out something to help soon.

Do you want ideas for supplementation? I have had to work hard on making my supplementation more routine, as it is easy to forget in the chaos of kid care. Perhaps you could solicit the kids to help you take care of yourself? Perhaps that could be one of their school assignments? I have really enjoyed Epsom Salt baths . . . when I can squeeze them in! I also like the Dr. Ghillam's Calm plus Calcium, and I am trying to make Floradix (gluten free) as part of the routine to help with my iron levels. One of the problems that I seem to be having is that I now have elevated chloride. I had increased my salt intake in an effort to improve my sodium levels, but I am now backing off because elevated chloride may also contribute to some other symptoms that I am experiencing.

It is all so confusing, and difficult to figure out. And in my experience, it is so hard to find the time and energy to do the research and study needed for our own health when surrounded by our children! More HUGS!!

[momof6incfl]

Hi, Lynne!

Lots of HUGS, Mama!! I struggle to feed my family with three very young, very sensitive kiddos. And, I am quite sensitive myself. We have been at this for a while now, and I still find that gluten cross contamination ends up in my home. Sometimes it is simply from other people coming into my home to help us. And, it is absolutely amazing how prevalent gluten cross contamination is in our food chain. We continue to have lingering issues, as long as we eat out of packages. I now view packages as known sources of gluten consumption, and I budget them accordingly. I have aspirations of being package free, but with a 19 mo, just turned 4 yo, and a 5.5 yo . . . well, it doesn't seem that it will happen soon. I just wanted to share our perspective on ANY packaged food to help you gain perspective on where you may still be getting some lingering gluten. We would not consider having ANY gluten in our pet foods . . . and that is a primary reason that we have not looked more seriously at having pets in our home right now. We are simply THAT sensitive, and I am starting to understand that I am THAT sick.

I wish that I could come help you. Understanding our celiac status has definitely put a halt to having more children . . . I can't handle it!! Have you considered trying to find someone to come in and help take care of some of the household stuff? We have had pretty good luck with mother's helpers, but they must follow our gluten free protocols. You need to be supported, and I understand how difficult that can be!

Have you looked at the University of Maryland Center for Celiac Research? I recently heard Dr. Fasano speak, and it was amazing. I hope that you can figure out something to help soon.

Do you want ideas for supplementation? I have had to work hard on making my supplementation more routine, as it is easy to forget in the chaos of kid care. Perhaps you could solicit the kids to help you take care of yourself? Perhaps that could be one of their school assignments? I have really enjoyed Epsom Salt baths . . . when I can squeeze them in! I also like the Dr. Ghillam's Calm plus Calcium, and I am trying to make Floradix (gluten free) as part of the routine to help with my iron levels. One of the problems that I seem to be having is that I now have elevated chloride. I had increased my salt intake in an effort to improve my sodium levels, but I am now backing off because elevated chloride may also contribute to some other symptoms that I am experiencing.

It is all so confusing, and difficult to figure out. And in my experience, it is so hard to find the time and energy to do the research and study needed for our own health when surrounded by our children! More HUGS!!

[momof6incfl]

Thank you! Hugs back to you too! May I ask, where are you? Im in central Florida. The kids do have chores but I tell you, they are stressed out and it is so hot here no one can function properly. We havent had air conditioning or heat in a year. We rent and its frustrating,but the landlord has been very good to us and we couldnt find anything else for this price or anyone to rent to a family this big, plus we are on 5 acres,which we really need due to our asthma and allergies. No one brings food into our house. Most of my ackaged food is just rice,beans,dedicated gluten-free facilities. I get milk but its soy or almond and we buy things that have just a few ingredients. I make my own everything! We are really allergic to latex. We had chocolate chips and my mouth went numb becasue they used a rubber conveyer belt in manufacturing them. I cant even use a knife after someone else if they cut a melon, Im anaphlyactic. Poor klids have to eat melons outside or at church only. I cant even smell it or I start wheezing! I wish I could get help. Right now Im going to try to clean out some of the garage before it gets too hot. I get boxes together and put them out of sight. Now Im just going to get rid of everything! Our church is having a yard sale in a few weeks, maybe we'll find some good stuff too. I get really overwhelmed. I like to just sit and read to them and do school, its the managing the household chores, the complicated cooking, medications for all kids and self, monitoring my own diabetes, and running to the bathroom all day that does me in. No time to break up squabbling and it seems the days go by fast just maintaining that we often dont get to have fun and thats the whole reason we homeschooled all these years!! I did go to Boston Celiac Center in the fall of 07 but had a tia,small stroke, and had to come home. Im seeing a specialist in Orlando in a few weeks. I cant buy any supplements, we often go without tp,soaps and such, our rent and electric are more than our disability income. Our food is so much more, you know that and we get $100 a person per month. Im frugal but not that frugal. I cant make it last ever no matter how hard I try. I will even fast a week and the kids only drink faucet water(well)juice once a day. Its so frustrating to be one of those families that falls through the cracks like this. I agree, we spend a lot of time doing research and there just isnt enough hours in the day. I believe though that God wont give us more than we can handle and this is all for a reason, perhaps we will help others through our experiences. Ive got to help my husband with something. Take care and have a great day! Lynne

Hi, Lynne!

Lots of HUGS, Mama!! I struggle to feed my family with three very young, very sensitive kiddos. And, I am quite sensitive myself. We have been at this for a while now, and I still find that gluten cross contamination ends up in my home. Sometimes it is simply from other people coming into my home to help us. And, it is absolutely amazing how prevalent gluten cross contamination is in our food chain. We continue to have lingering issues, as long as we eat out of packages. I now view packages as known sources of gluten consumption, and I budget them accordingly. I have aspirations of being package free, but with a 19 mo, just turned 4 yo, and a 5.5 yo . . . well, it doesn't seem that it will happen soon. I just wanted to share our perspective on ANY packaged food to help you gain perspective on where you may still be getting some lingering gluten. We would not consider having ANY gluten in our pet foods . . . and that is a primary reason that we have not looked more seriously at having pets in our home right now. We are simply THAT sensitive, and I am starting to understand that I am THAT sick.

I wish that I could come help you. Understanding our celiac status has definitely put a halt to having more children . . . I can't handle it!! Have you considered trying to find someone to come in and help take care of some of the household stuff? We have had pretty good luck with mother's helpers, but they must follow our gluten free protocols. You need to be supported, and I understand how difficult that can be!

Have you looked at the University of Maryland Center for Celiac Research? I recently heard Dr. Fasano speak, and it was amazing. I hope that you can figure out something to help soon.

Do you want ideas for supplementation? I have had to work hard on making my supplementation more routine, as it is easy to forget in the chaos of kid care. Perhaps you could solicit the kids to help you take care of yourself? Perhaps that could be one of their school assignments? I have really enjoyed Epsom Salt baths . . . when I can squeeze them in! I also like the Dr. Ghillam's Calm plus Calcium, and I am trying to make Floradix (gluten free) as part of the routine to help with my iron levels. One of the problems that I seem to be having is that I now have elevated chloride. I had increased my salt intake in an effort to improve my sodium levels, but I am now backing off because elevated chloride may also contribute to some other symptoms that I am experiencing.

It is all so confusing, and difficult to figure out. And in my experience, it is so hard to find the time and energy to do the research and study needed for our own health when surrounded by our children! More HUGS!!

[weluvgators]

You have SO much going on!! Have you made your own nut/seed milk before? We had to eliminate soy because of issues with it. I am still not sure if my soy issues are to soybeans or if it is simply the seemingly omnipresent gluten cross contamination. My last horrendous attempt at eating soy left me with a gluten type reaction, but I was SO new to understanding my issues with gluten that I simply dismissed the reaction as a soy reaction. I don't have the heart and energy to do another test anytime soon. I was not apparently sick at all when I figured out my gluten issues, and it is still taking me years to recover. I am certain that I have functional liver and kidney issues related to my years of gluten consumption. There is a viscous cycle that happens with the celiac condition, as mineral absorption is vital to enzyme production which is vital to mineral absorption . . . so when you add a kink into the nutrient absorption cycle . . .well, the results can be devastating. I just don't know how to improve nutrient levels without supplementation at this point. *I* am in such a hole for nutrient levels that it is very difficult to correct that, but it is a needed correction in order for my body to function properly.

I hope that you can figure out something more soon! We have had to take a really hard look at our staple food supply to ensure that we are bringing truly gluten free food into the house. Have you tried avoiding all of the foods that have been related to latex allergy (Open Original Shared Link): "Fruits (and seeds) involved in this syndrome include banana, pineapple, avocado, chestnut, kiwi fruit, mango, passionfruit, strawberry, and soy. Some but not all of these fruits contain a form of latex."

I think the house on 5 acres with homeschooling kids sounds so lovely, yet I understand how the dream and reality don't always seem to match so well! There are so many amazing lessons to learn about feeding ourselves, and it is astonishing to me that it takes such a back burner in our educational systems (or is it a lesson of how not to feed yourself that takes a front burner in our educational system??). I am striving to make the eating in our home more basic and instinctual, but it is hard to change decades of learning and habit over such a relatively short period of time. Never mind all of the other extenuating circumstances that make it just feel so overwhelming! We are in southern Illinois, but we have an affinity to central Florida . . . yes, we love the Gators!!

And, have you found beans from a dedicated facility? We haven't been able to find them yet!! I would love to share food sources!! I need serious help in making this food thing more routine. As for TP, we use a fair amount of cloth to help reduce our TP demands. We also try to use cloth for paper towel uses as well. We picked up sale fabrics to make them and enjoy them.

You have a lot on your plate!! And, I hope that you are able to find help soon.

[ChemistMama]

If you're in Florida, have you heard of this charity?

Open Original Shared Link

"...Kessler and her Delray Beach-based celiac support group have raised more than $9,000 to help those too poor to buy (gluten free) substitutes.

She and the folks at the Celiac Disease Foundation of South Florida call it their Gluten Free Food Assistance Program. They believe it's the only one like it in the country.

...Kessler says she spent not hundreds, but thousands of dollars in her first year in trying to find suitable substitutes that did not taste like sand grit or cardboard.

The gluten-free assistance program will offer to supplement family groceries for up to 30 families in Florida this year. The support group believes most of those families will be drawn from Miami to Vero Beach, Kessler said.

To receive aid, families must show that their income meets federal poverty guidelines by proving they live in public housing or receive food stamps, for example. Those who qualify will receive a $25 monthly allowance at one of several approved grocery stores that carry gluten-free foods.

The group's first family is on board: a mother and her daughter from Davie.

The daughter was diagnosed but, according to Kessler, the mother was struggling to feed her.

To contact Phyllis Kessler, call (561) 637-0396 or e-mail her at Pkessler23@aol. com."

I wish you luck!!

[momof6incfl]

I have not heard of that agency at all. In fact, I just sent a letter today requesting advice and letting them know how little we get for food stamps and how expensive our food is, especially when theres even more than gluten-free diets requires,no eggs,dairy,corn,potato for a few. We get $100 per person for the whole month and Im frugal, but I cant make it last. Thank you so very much for that information, I will contact them tomorrow. Take care and God Bless! Lynne