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happylittlemama

In Laws Can't Accept Diagnosis

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We have just been diagnosed with Celiac in the last month and as a result we have started changing over to a gluten free diet for everyone in the household, which includes 6 kids and three on the Autism spectrum. In just a month we have been seeing wonderful changes in the kids and I'm starting to feel lots better. My husband let his parents know what we have been diagnosed with and his mom even asked for a cookie recipe I managed to convert to gluten free. I thought, "Great!! They understand and are being supportive!"

With this in mind, we drove up there this weekend. We brought our own picnic so they didn't have to feel obligated to feed us, and invited them to a park for BBQ. When the topic of our diet came up my FIL completely turned on us.

He just couldn't believe that wheat could be bad for you, and offered up all kinds of ignorant advice, like sprouting wheat and trying it, and if we could handle that, then we could eat wheat. At one point he offered to get the kids some cookies from his freezer, but when I told him if they were made out of wheat, we couldn't have any he responded with "They're low in sugar!". Right now I'm not so concerned about sugar to the degree I am about wheat. He just could not understand how we could be allergic to wheat.

In his defense I think it is a survivalist mentality. Being Mormon we are told to have food storage and most of that food storage is wheat, flour, pasta, and all the recipes are how to use wheat not just for breads, but in mock brownies or fudge or hot cereals. I'm sure eating a whole grain diet can be good for a lot people...just how to I explain it's not good for us? How do I get him to see that my daughter is no longer psychotic (or my son for that matter, to which he had told me he just needed a good spanking and that should set him straight when he was seeing people, hearing voices and couldn't remember anything two minutes from now)? How do I get him to understand that eating gluten was killing me? When I answered with the reasons why we went off wheat he declared that it could be so many other things. Which, yes, I agree, but going gluten free has cleared up many of the problems we had.

One of my concerns is that when they come to visit us they might try to sneak food to the kids. All wheat products have been removed from the house, so I'm not concerned that my kids will get it from what they prepare for them, but possibly what they bring to them or take them out to get. Any suggestions to handle this with grace and tact?

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Because they are your hub's parents and if they are fairly traditional Morman, it will be taken better if your hub puts his foot down with them. If you are close to your minister, maybe he would understand and talk to FIL.

Until you can be sure he won't hurt the kids (and suggesting hitting a mentally ill child makes me think that may be never), you will have to limit his time with them. Also, never leave them alone with him.


 

 

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I keep seeing similar posts like this one where friends or family members don't believe in celiac, gluten intolerance and or wheat allergies. They can't accept that this could be the cause of so many symptoms - gi, skin, neuro, etc. despite the overwhelming evidence right in front of them. Even if they're not ones who would sit down and read an article or book on the subject, or you know believe in medical science the fact that the people they presumably love who are right in front of them are getting better should be enough proof. It boggles me. They seem to have an overwhelming need to be right over everything else. Makes me wonder if these folks have a bit of gluten induced cognitive issues going themselves. Maybe you should suggest that to them ;)

On a serious note since they seem to want to be right over doing what you and your husband have decided is best for your family I would lay down some serious boundaries. They have to be on board with your decisions in order to see the kids and have them in their care. No if ands or buts about it. If your kids were diabetic would they feed them sugar?


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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I'm sure if your in-laws were gluten free they would be a lot more accepting. lol


1960s-had symptoms-could have been before but don't remember

1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms

Me, dd and ds diagnosed with Lactose Intolerance

2000-osteopenia

2001-had stroke because of medications I was given

June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months

June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)

May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

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How frustrating. I just don't get it. No one questions a peanut allergy. Or would consider sneaking your kids peanut butter in a cookie, etc.

I'd definitely take the recommended approach (above) and enlist the assistance of your Bishop. (and if you are in diff. ward than inlaws, have your Bishop talk to their Bishop)

Have your husband make a family appt. with hubby and FIL and MIL and discuss the importance of compliance to this diet - and the dangers of non-compliance. Perhaps you can do some research beforehand and take printed materials from indisputable sources, like University of Chicago Celiac Center, University of Maryland Celiac Research Center, etc.

In terms of the year's supply of food, there are beau-coup gluten free flour blends, and grains like rice and buckwheat, etc., and in no time at all you'll be finding and archiving gluten free recipes as well. There are many resources now and you can adapt what you put into storage to be items that will sustain your family and not cause them physical damage.


Diagnosed 8-8-08 (I think I'll remember that date!)

Positive blood panel

Endoscopy a little later on confirmed, via Small Intestine Biopsy

Adult son diagnosed Celiac in his late 20s

Suspect my Mother undiagnosed Celiac

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Sounds like he doesn't understand what this disease is, and that from a cultural standpoint, if a man does not tell him what it is, he isn't going to pay any attention to it.

Even in the non LDS world the resistance to acknowledgement is very strong. I don't "officially" have this disease because I was misdiagnosed for so long that I gave up and had taken myself off of grains, after concluding I had nothing to lose and that my symptoms matched being gluten intolerant, besides my being sero negative but definitely arthritic. (that and a neuro had blown off a brain scan showing bright spots as non related.... not so. ) After a while off of gluten, you then won't ever have the blood antibodies. I haven't done the genetic testing because I'm a product of all the correct "more likely to be" ethnic groups anyway, and I am not needing additional motivation to stick to a gluten free diet.

I tried searching to see if there were any LDS/Mormon blogs specifically devoted to this, but all I'm coming up with are discussion threads.

You might try looking at this site http://www.gfutah.org which is the Gluten Free Utah, aka Gluten Intolerant Groups (GIG) of Utah webpage. Once that your relatives realize that there are lots of people with this disease they might take it more seriously.

This was a wonderful post by Dr Mark Hyman from 9/5/2009 "Why current thinking about autism is completely wrong"

http://www.huffingtonpost.com/dr-mark-hyman/why-current-thinking-abou_b_275753.html

Notice how he tested this (autistic) toddler for gluten antibodies and other food allergies, and signs of inflammation, for yeast, and the child then responded to diet change.

Dramatic scientific discoveries have taken place during the last 10 to 20 years that reveal the true causes of autism -- and turn conventional thinking on its head. For example, Martha Herbert, MD, a pediatric neurologist from Harvard Medical School has painted a picture of autism that shows how core abnormalities in body systems like immunity, gut function, and detoxification play a central role in causing the behavioral and mood symptoms of autism.

She's also given us a new way of looking at mental disease (and disease in general) that is based on systems biology. Coming from the halls of the most conservative medical institution in the world, this is a call so loud and clear that it shatters our normal way of looking at things.

That means that if you take 100 kids with autism, each one may have unique genetics, and unique causes or triggers for their autism and need very different treatments to get better. Autism is just a label. Like every condition or illness, the key is to dig into the layers and peel the onion to discover what is really happening. It is not usually one think but a collection of insults, toxins and deficiencies piled on susceptible genetics that leads to biochemical train wreaks we see in these children.

We have to pay close attention to what we see, and be ready to work with the unexpected according to the basic principles of systems biology and medicine (known as functional medicine).

There is also a huge fight going on in the internet world, where I have seen people who are not on the up and up about their $ ties to the pharmaceutical industry, who have been having a lot of fun trashing people who discuss the relationship between diet and disease. (and between diet, nutrient shortages, and emotional issues- I have argued this with people who have advanced degrees who are just plain dishonest and like play around on the internet being trolls ) I do not like these people and I will rebutt their phony arguments whenever possible, and I especially dislike it when they say things like "anecdote does not prove cause and relationship," which is pharma code speak for "we need to trash Jenny McCarthy and her whacky theory that her autistic kid is better on this kooky diet, because she's hurting our bottom line." Ignoring the vaccine issue, just because your company needs to sell more drugs doesn't mean that there are not thousands if not millions of undiagnosed celiacs and gluten intolerant people out there, world wide, and that SOME autistic children are not better off on a gluten and dairy free diet. The genetics are there. The observations are there. The results are there. The latest so called "study" I saw in the main stream media was where some researcher took a very small group of children who were not gluten intolerant, and concluded that diet change to a gluten free diet didn't affect their autism status.... well DUH. This idiotic study was prattled all over the internet that week as "proof" that diet didn't affect autism. I tracked the researcher down, and it was, get this, not even a medical doctor but a research psychologist who had done it. Indeed, if you google "autism diet" right now the second link and third link on the list, is to a webmd.com commercial site and a sciencedaily site that has this garbage up.

And I say garbage, because they are putting the conclusion before the intrepretation of the observed change. Lousy science.

The rat race for research dollars is really not doing any of us a favor. If your father in law has read any of this trash, he may have had his opinion colored by this.

Some gluten intolerant and celiacs do eat whole grains but just not ones made of wheat. There are many, such as corn, brown rice, sorghum, millet, amaranth, quinoa, teff, buckwheat (a seed, not a grain, but still whole and not refined). And then there are starches that are used for baking that are made from other products, such as potato, tapioca, arrowroot, cornstarch, etc. There are even flours made of beans. And all of these gluten free alternatives can be stored long term. You may have better luck storing them in a refrigerator than in a cupboard, because they don't store well in heat, but the only difference is the cooking techniques.

Eating a whole grain and sometimes a whole grain and a vegetarian diet is good for some people, but certainly not all people. There are variations in how we all are for a reason, so if the environment changes, people can adapt and survive. And we have been given so much variety and so many different foodstuffs to eat, it would be a shame to get stuck on just one of them. :)

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He needs information. As much as you probably want to throttle him, you'll have to find a way to do it lovingly and tell him you understand his concerns.

I would print up or photocopy a simple one page explanation. I'm sure you can find something somewhere. Have your husband give it to him.

Keep the kids away from them for now and keep working at this. In laws can be so difficult. Mine are crazy but mother in law is an allergist and immunologist so she totally gets celiac and is supportive. She was thrilled when I got diagnosed because she has been giving me antibiotics for years for my unexplained sinus infections every 2 months. Haven't had one in 7 months now. Woot!


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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Sadly, I wonder if there really IS a way to handle it with tact. It might come down to a choice between tact and your children's health, and I'm sure you'd choose one over the other.

However...one idea for possible easy resolution? This is based on very little information, I'll admit. Just my impression of your in-laws, from your description, seemed like they might be those who would be suspicious of 'new' things. that view celiac disease kind of like a new-fangled fad, since it seems to be cropping up everywhere. It's not real, etc...

IF that's the case? Maybe giving a little history lesson might help. This is a disease that has been known for thousands of years, actually. It ain't new. We get the name 'Celiac' from writings we have from ancient Rome that talk about it, even! Their writings refer to the cases that were the most severe, where the people were starving to death in an obvious way, and even back then, they figured out what made them sick, and what made them well.

Today, the numbers are increasing in civilized areas, and the symptoms are slower for a larger portion of us, but I wonder if letting your FIL especially realize that this is not a new phenomenon might help get him on board? Because if he's not - I'd not let him near, if you can't trust him to keep your kids safe.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Thank you for your replies and I will be taking the suggestions to heart. To Takala, thanks for your quotes and info. I do have one son that was 9 mo. old when he ran a fever for 7 days after getting the MMR vaccine, and was never the same again. The diet helps somewhat, but I have a feeling it is always going to be "something" there that won't be corrected by diet alone.

As for my IL's, they are not left with the kids alone. I'm a nervous wreck if we leave them without another adult present because of past history. I will start sending them articles and such here and there as I find them so they don't think it is some hypochondriac thing I thought up. Thanks for your advice..you guys are great!!

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I think it's also important to be straighforward, matter of fact and firm when you discuss your disease with people. Don't waffle or apologize. Nobody has ever doubted me when I talk about celiac because I talk with authority and I'm very firm about it. I also don't give people info about uncertain diagnoses or the ins and outs of the disease unless they ask.

It actually surprises me how many people do ask. They are so curious. In social situations I find myself educating people because they ask so many questions.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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