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Connie R-E

I'm Getting So Frustrated!

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My friend's 7 year old boy was just diagonsed with reumetiod arthiritus(where's spell check when you need it?). He can't walk well due to it, has food aversions, takes asthma medications daily. He, and his siblings, have ashen skin and allergy shiners under their eyes...(people are always asking who gave them the black eyes!) and they are so darn skinny!

And, their grandmother was just doctor diagnosed with Celiac!

I have tried and tried to tell her about celiac, and how she could help her family...

I'm getting so frustrated!!! :angry:

The other women in my/our group (Ya-Ya's) agree with me (they always go out of their way to make things gluten free for our weekly get togethers!) And, they actually understand about celiac.

We may just sit her down and try, yet again, to explain that it isn't that much more expensive to go gluten-free(her main argument)--especially when she could save a bunch of money on all the medications her kids have to take in a day! --which I bet would be near unneccesary on a gluten-free diet.

So, is it wrong to have an "intervention" for our friend and her kids/family?

We are all to that point. :blink:

Connie

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Oh, Connie, I feel for you! I know a family of four where I think they ALL need to be tested for celiac disease, but I had to bite my tongue with them, or they would close their minds to it forever! I actually did get an opportunity to talk to the the father and mention testing the baby, at least--and I know that my expression was dead serious and not the least bit apologetic, because I was shocked to discover that the baby's belly was distended (which didn't show through heavy winter clothes) and his torso and legs were covered with eczema patches and a pimple-like rash! We'll see what comes of it, but I'm not holding my breath.

It IS so terribly frustrating, and somehow it is especially hard when children are involved! WHY won't their parents advocate for them, since they have NO power to improve their own health? I get the feeling that this woman in your group either doesn't understand the extent of the damage that gluten is doing to her children's bodies or is deathly afraid of accepting the ongoing, unrelenting responsibility of implementing and maintaining the gluten-free diet--or both. It's easier to say, "it's not my fault" and demand a magic pill to fix the situation than it is to make a permanent lifestyle change (especially one that is widely perceived to be extremely restrictive). I would be surprised to hear that the expense of the gluten-free diet is TRULY her primary objection; I think it's more likely to be an excuse to avoid examining the truth of the situation and her own emotions and priorities.

If you and your friends all sit down and explain the facts, calmly but with NO TRACE of apology, you might actually get somewhere--but then, you might not. It depends on how proud this woman is, and whether she is willing to let her guard down around all of you and acknowledge her deep, dark feelings (frustration, fear, deep sadness, inadequacy--to name just a few). It might be a good idea to approach the emotional aspect of being the parent of sick children first. If your friend believes that her feelings are understood and respected, she will probably be more open to listening as you describe the probable necessity of making a major lifestyle change!

I think you and your friends are within your rights to express your deep concern to this woman, as long as you do it in a friendly and mature way. It would probably be a good idea to meet first with your friends to discuss how you will approach the matter with this woman, and to make sure that everyone will be able to remain calm and not lose her temper if the woman is reluctant to listen. Remember, too, that you can lead a horse to water, but you can't make it drink. If she won't consider implementing the gluten-free diet for her children, don't bring it up again. Ultimately, no matter how hard it is to accept, this woman's children are her responsibility, and she has just as much right as anyone else to make a poor decision. Hopefully, if that happens, she will eventually change her mind on her own!

I hope my opinions help you clarify your own position on this matter, and I wish you success if you decide to "intervene"!

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Connie, my heart goes out to you! I can almost see those children in my mind's eye, and the suffering they are enduring. Sarah's comments should be so helpful, and I agree, there is every reason to boldly approach the subject with your friend. Is there any way to convince the recently-diagnosed Grandma to add her input? She must care about her family members, and perhaps she would know a strategy that would work. I'll be hoping that your intervention is a success. Welda

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Guest PastorDave

Hi there. I know that this may not of be much help, but I was thinking about the "cost too much" arguement. I am a pastor, and although I am well paid, I didn't get into the ministry to get rich, and it shows. My wife works full time as well, but we live in Missouri, where there are few people who get paid well. Since I had to go gluten-free, we faced it as a challenge. (Fortunatly for my I found out before it got bad, my Mom has it and convinced me to get tested). We actually enjoy finding ways to save money on gluten-free stuff. My wife bought a flour mill (of course you have to buy one new which is expensive) and we grind our own flour, and this has been a big money saver in the long run as you can buy the beans, rice, and other grains alot cheaper at bulk food stores. We found a health food store that has "Super Tuesday" the first Tuesday of every month where the take 10% off everything in the store. We just have fun with it.

When you think of all the awful things that I can get as a result of Celiac, things like cancer (scary), the cost doesn't seem so bad.

I hope this will help. Be encouraged.

God Bless :D

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Being someone who's had the "my brother has this and it sounds like what you have, you should get it checked out", I can understand, to a point, where your friend might not welcome the news. (I tried to tell the person, "Nah, I know my asthma pretty well," but he thought I was just being dismissive.) On the other hand, I agree, it can be very very frustrating.

Perhaps a call to the friendship, asking her to listen - for your sake - just once with an open mind. Have your evidence layed out before you and your facts prepared - like a lawyer - but stay away from scaremongering (like "your kid could end up dead from cancer at 40!") because it can sound like a hard-sell from a car salesman. I think it's a fine line to walk.... I think I'd be just about as indecisive as you about the intervention. (Though really, she's just uncreative if she thinks that a gluten-free diet has to be more expensive... It's not like we need bread to survive! :-) )

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:) Thanks for all the advice and encouragement!

I've been trying the slow but consistant approach, and I think it will work. I give her a few facts and figures when appropriate... This weekend I gave her Enterolab's brouchure. It seems the doctors now can't decide if her MIL has celiac or what! My vote is still on celiac, knowing it is difficult to diagnose. If her MIL uses Enterolab, or if she does, then maybe something good will come of it. I also suggested that the gluten-free diet could make the medications unnessecary and then the food money could increase (and reminded her that my family is next to dirt poor, and we've eaten gluten-free for 6 years!). We found some books that suggested that her husband's mood swings could be food allergy related--she was interested in that! (His Mom is the celiac.)

Don't be mad at her.... Our friend is a little "mouse" of a woman (depressed, fatigued, skinny, ashen... *celiac*... ;) ), and if I were to say "Boo!" loudly I think she might faint! (Not a Tiger, like me!) I know she is just scared, and feels even more powerless in her life with this new obsticle.

"...it's more likely to be an excuse to avoid examining the truth of the situation and her own emotions and priorities." "...her deep, dark feelings (frustration, fear, deep sadness, inadequacy--to name just a few."--seeking_wholeness

Right on the mark! I think. Do you know her? :lol: LOL!

I know she already has trouble with doing her day-to-day chores...

I'm sure she can't even imagine cooking from scratch!

So, now we've talked to her about her kids, her husband, her MIL, and soon we will talk about how she could feel better, too. Our next project is to see if we can get her to try gluten-free for her whole family for 1 week--and see if it helps anyone. (I bet she will have more energy!) I think I can arrange her current menu to be gluten-free, and even help her shop for a gluten-free week--if she'll let me--but she'll have to cook a bit! ;)

We don't mind helping her at all--it just looks like a long term project!! :P

I guess I'll live up to my name!

Constance

It is difficult to change your diet, I do understand. I've been there myself many times. You don't know what to buy, what to eat, or how to fix it.... (Right now, I have to avoid sugar and high carb foods--I'm still adjusting! :blink: )

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Guest TESTinME

I hate to hear stories like this. I don't understand how a parent could neglect to look into these things when there is obvoiusly something wrong. I was very skinny as a kid with shiners too.

I'd print out some articles on celiac desease that talk about different symptoms. What does she say about her kids being skinny and the shiners?

Unlike the other poster, I would resort to scare mongering. Celiac's is serious business and your friend needs to realise that her kids long term health could suffer greatly if they are celiac and not gluten-free (including BIG increase in risk of colon cancer).

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Don't be mad at her.... Our friend is a little "mouse" of a woman (depressed, fatigued, skinny, ashen... *celiac*...  ), and if I were to say "Boo!" loudly I think she might faint! (Not a Tiger, like me!) I know she is just scared, and feels even more powerless in her life with this new obsticle.

"...it's more likely to be an excuse to avoid examining the truth of the situation and her own emotions and priorities." "...her deep, dark feelings (frustration, fear, deep sadness, inadequacy--to name just a few."--seeking_wholeness

Right on the mark! I think. Do you know her?  LOL!

I know she already has trouble with doing her day-to-day chores...

I'm sure she can't even imagine cooking from scratch!

Connie, I'm not actually mad at your friend, just sharing in your frustration! Your friend sounds almost like I used to be--except that since I am an Aries, and born in the year of the Dragon, I have always known that deep down inside I am very strong. I used to prefer the victim mentality, though, and I had a hard time even accessing my inner strength because my celiac disease symptoms (severe depression, especially) got in the way. Now that I feel so much better, I have to restrain myself from swinging too far the other way and becoming callous and dismissive when other people act like I used to! (Somebody let me know--gently, please--if I ever come across that way!)

I'm glad that you've found an approach that may work for your friend, and I'm glad you have the "Constance" to treat the situation as a long-term project. :D Your friend is fortunate to have a Tiger to look out for her! I wish you both the best of luck!

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Don't worry, Sarah, I know you're not mad at her! :D

Some of the others have sent personal emails that were not as understanding towards her! (But, I understand why they were upset--and they included some great ideas!)

I used to be rather "mousey" myself--until I just got tired of it and let loose my tiger!

Have a great day! :lol:

Connie

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Hey! PastorDave,

About that grinder.... What kind of grain-to-flour ratio do you get?

If you grind 1 cup of rice, how much flour would it make?

I've been curious for a while (we live in Arkansas--not a high-income state either! :D )

Thanks,

Connie

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Well, it's called "Welcome to the club". I'm 54. For the whole my life, I've been having stomack/intestinal problems and a whole bunch of other ones. Recently was diagnosed with gluten intolerance. My Father and both grandfathers died of stomach cancer. My daughter is a smart, intelligent, serious girl of 24, studies alternative medicine. Her daughter is 4, extremely skinny, weighing just 29 pounds, her hight is less than average. The skin on her little legs and arms is covered with pimple-like rash (someone mentioned it - is it also a simptom of celiac disease?) since the moment she came to this world. My daughter takes a good care of me and my diet including all the precausions, when I visit them and stay there for a week or so, she is a good cook, she knows all the stores around them with gluten-free foods. They are not rich, they are not poor either. My daughter doesn't want to here about being tested for celiac disease or getting the little one tested though she also knows it's hereditary. She knows everything, all the consequencies. And she does not want to really know about it though she is quite aware of how much I suffered. It's like she is scared to have to face the problem and deal with it. I don't know what to do with her.

This section of the board hasn't been visited for about 3 weeks. Where are you people? Any advice?

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Yeah... Welcome to the club, Alexa. :(

It's much worse when it is your own family who won't do anything. With such a family history, it must be really frustrating for you. :angry:

Since I'm not doctor diagnosed, my family acts like it's not real.... I know a gluten-free diet would help them, too. I don't know what to do with them! I just keep trying to be heard...

Since your daughter can make gluten-free food for you, maybe you could visit more often? It does sound like she's scared (just changing one's diet is scary enough--besides all the other things associated with celiac disease to be worried about), but with repeated exposure of how she CAN cook gluten-free, maybe she'll gain confidence and at least get over some of her diet-changing fear? Then maybe the rest will fall into place. (Turn the big obsticles into smaller ones that can be acheived?)

I don't know...

I hope all the best for you.

Connie

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Guest Margawitty

My celiac girlfriend has an identical twin sister (split zygote) and her twin absolutely REFUSES to get tested for Celiacs. She goes through periods when shes fine and then through phases where she'll be calling Andrea (my girlfriend) early every morning saying her stomach hurts so bad and swears she'll try gluten-free but that only lasts like one day. Andrea and her family are constantly trying to sway Jennifer (the twin) to get gluten free but I think she just doesnt want to accept it. She has seen how much better Andrea is now but I think she is afraid to "know" that she has celiacs.

She has the same symptoms that Andrea used to have, they are not as severe but they are bad enough! I think that with some continued gentel pushing that at some point she'll try gluten free long enough to realize how much better she feels, at least that is what we all hope! We know we can't force her to do it!

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I told my sister in law last week that I think she has celiac (her brother, my husband has it) and she told me that she'd rather be dead than have to eat gluten free. She's not denying she has it, she just doesn't want to have the bother of the special diet.

Maybe you can suggest to that mother that next time the baby gets a blood test??? they add the "gluten" test to it too just for safety's sake?

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give her some info, but then leave it at that!! you can not force anyone to do anything they do not want to do!!

i have two people in my life that i believe have celiac. One is my mother, and the other is a friend. i brought it up with my mom first and she just said " oh no...i dont have that trust me, i know" and then i talked to my friend. " he seemed the same way, but a few days ago he called me to say he had been gluten free since our conversation and was wanting some more info.

I believe if you are too pushy it will just make her mad. let her know what you think and that you will be there for support if she does decide to go gluten-free.

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;) we humans are so stubborn--i was telling a girl at work that her mom should get tested for celiacs--the mom has fibermyalgia and the daughter talks about how her mom has trouble with her meds and such, so i told her about celiacs--she went straight to her mom and told her--mom said, "could be true, but, i will live with the fibermyalgia before i will give up my food!" :rolleyes: yet, this same woman called her sister, who suffers also, and told her that she should get tested for celiacs--SOOOO, she believes me, but thinks gluten-free is too big a sacrifice <_< ---my own daughter is just as bad--she tells me she will never give up her pizza or chicken fingers and i tell her, she doesnt have too, she just has to learn to make them gluten-free------i would love to see a follow up on this mom and her kids at the beginning of this thread--i know as a mother, sometimes i feel so guilty for sharing diseases with my children :( , even though it is not my fault to begin with :unsure:

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    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
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    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
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    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257. &nbsp;doi: 10.1136/gutjnl-2015-310148.