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Bubba's Mom

Member Since 29 Jun 2011
Offline Last Active May 13 2013 11:37 AM
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#806554 Trouble With My Family

Posted by Bubba's Mom on 26 June 2012 - 06:38 AM

You aren't crazy or paranoid! You have to be that careful. I'm so sorry your mom just doesn't get it.

I live with a hubby who's only home on the weekends and a grown son who is mainly here after I go to bed at night. (He's a gluten eater and not the least bit careful).
My hubby tries to be aware of spreading gluten around, but sometimes he forgets or isn't careful enough. For a while I had to call him back to the kitchen after he "cleaned up" and show him what he had left behind so he'd learn. The way I approached it had to be in the right "tone" or he'd get offended.

I can never assume that the counter or stove I wiped down after cooking is clean. I never lay anything on the bare counter. I use paper towel/paper plates a lot. I have separate plates, bowls, and silverware that I hand wash after eating rather than put them in the dishwasher. I've seen plenty of dishes come from the dishwasher with "stuff" on them so I don't trust it.
I had to get my own microwave because the shared one always has crud in it.

It's extra hard when you aren't the one in control of the kitchen. The colander is dangerous to share. It's impossible to clean all gluten from it. Wooden spoons and cutting boards can hold gluten too.
I hope you can find a way to help your Mom understand how trace gluten can keep your system upset and prevent healing.
Perhaps she's finding that gluten *might* be affecting her and that's why she's so bullheaded about gluten being so dangerous? She may be in denial/scared about how it's affecting her as well?
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#806365 The Tale Of The Lemon Bars

Posted by Bubba's Mom on 25 June 2012 - 02:22 PM

okay, what I meant was....I was the baby of the family with 2 siblings.

I had to sit in the MIDDLE of the back seat and my feet rested on the "hump"...is anyone old enough to recall that "thing" in the floor of the back seat??? (the drive shaft went through it, my car geek hubs tells me)

and I could also climb back and forth to sit between my Mom and Daddy with ease, like a monkey.

You know, in the olden days--- before seat belts?


UM, ladies......what did YOU think I meant? :huh:

I'm a middle child hump sitter too! LOL
I have to admit when you said you were good at back seat manuevers my mind went to a different place than "hump sitting' and wriggling between front and back seats. ;)

I applaud your sheer determination, and I'm sure those lemon bars are delicious. With all of the love you put into them they had to be good? :D

I can just picture you there in the parking lot..with your powdered sugar and tools..like an epsode of "I Love Lucy". Bless your Irish Heart. :lol:
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#804929 I Attended My First Support Group Meeting.

Posted by Bubba's Mom on 20 June 2012 - 07:03 AM

Sorry to hear there wasn't a better turn out for the support group. After all of your planning and getting away for some "you time" it had to be pretty disappointing?
When first DXed I looked for a group in my area and found there had been one, but they sort of disbanded and they no longer got together. I was hoping for a nice sized group that I could get recommendations for Celiac savvy Dr.s from, but it was not to be.

We'll be your support group, and what's nice is you don't have to wait until a certain night or time, or day of the month. You can come here anytime you want and somebody will be here. You can even visit in your PJs. I think your breath smells fine by the way. ;)
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#797071 Spouses Who Suck

Posted by Bubba's Mom on 20 May 2012 - 06:09 AM

My darling spouse and I were planning to go on a trip to an island with friend for a week. It so happened that we couldn't take our cars with us, so we couldn't take any of the food with us because we didn't want to carry it around. I suggested they eat at a restaurant at the island since I had an emergency food box packed in my handbag that I could take with me and eat later. Now the restaurant had lots of good food, but my darling hubs chose pizza. Pizza. .. really? He prefers a pizza over being able to kiss me all day.and what if he forgets as he usually does and kissed me without thinking. He did it on a plane once before. We planned to have a good time together and I was really excited.I would understand if he had the option to brush his teeth but we're trapped on a bloody island. I feel so. .. betrayed. I can't understand why food to him is more important than having a romantic day out with me. I just want to cry x(
He should be thanking god every day for having me in his life!

I understand your hurt feelings, but he probably didn't think anything of ordering the pizza? It's something he can't eat at home, so why not get it when he's out?
My hubby doesn't think about that type of thing either. It just isn't on their "radar". I carry damp paper towels in zip lock baggies for him to wipe his face and hands on once he's eaten "poison" when we're away from home. I try to be very mindful of not kissing him too. Even I forget about that sometimes! If you carry a purse..maybe carry a toothbrush for hubby? It could save a lot of trouble? He may find it annoying and be more mindful of what he orders in the future? ;)
I have to think of it like when my boys were babies/toddlers. I'd carry the damp towels, etc. for clean ups. With time, he should get used to the routine and think of it for himslf, but that comes with practice. This is all new for him too.
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#792305 Negative Blood Test-Poitive Biopsy

Posted by Bubba's Mom on 30 April 2012 - 04:42 PM

I was DXed with Celiac in June 2011, and went strictly gluten-free with a whole foods diet. Since then I've reacted to additional foods including soy, dairy, peanuts, tomatoes, MSG, yeast, sunflower seeds, and have ongoing symptoms.
A second scope 6 months gluten-free showed no healing. I was referred to Mayo Clinic in FL. They did a few tests and had more questions than answers and referred me to the Mayo Clinic in MN.
I met with Dr. Murray here today. He's the head of the Celiac Center and does a lot of research. He said he's seen a lot of people like me, who aren't healing on a gluten-free diet..and reacting to more and more foods.
He's ordered a battery of tests to see if we can rule some things out, or rule some in.

I had a list of my current meds, but he was more interested in my past meds. In particular, past high blood pressure meds, but others too. They are finding that some people are reacting to some medications with eneropathy (villi flattening) which continues even after the medication is stopped. He said they can can give an "antidote" to some of these meds, and stop the damage so we can heal.

I told him there are quite a few of us that fall into the negative blood, positive biopsy, reacting to more and more foods, group. He was very interested and asked if anyone would share what meds they were on before being DXed?

In my case he really raised his eyebrows at Lisinopril which I had to stop taking because it caused me to cough a lot.

Sooo..anybody care to share what meds they were on before their symptoms started?
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#787727 Newbie

Posted by Bubba's Mom on 15 April 2012 - 05:31 AM

Hello all,

I have been going it alone for about a year and a half and am hopeful this board will open me up to some support.

I have been suffering with migranes, numbness and tingling for years. A few years ago I started having stomach troubles; mainly severe gas and cramping after eating. I went to the doctor to be told it was IBS. His advice was to stop eating fruits and veggies :)

I wasn't convinced so I went to an allergist. I tested positive from a skin prick test for wheat. When I started avoiding wheat I began to feel better and became more aware of my symptoms and the reactions I was having to food. I also started to notice severe gastro reactions to barley and oats. Additionally I have found that I am lactose intolerant and soy intolerant. Soy actually causes worse gastro symptoms than gluten. I also get pretty severe acid reflux.

I then decided I would cut out gluten all together and noticed a dramatic improvement of almost all my symptoms. Gastro symptoms and nuerological symptoms are almost gone. My Vitamin b12 and Vitamin D levels are almost non existant. Sublingual tablets have helped here but I am still very run down. My doctor does not see how this could be related but I think it could be lack of absorbtion.

My biggest frustration at this point is a lack of respect or compassion from my doctors concerning my intolerances. I was actually tested recently by my physician after finally complaining enough. The results were negative which I now realize was because I have been gluten-free for over a year. I am in the process of waiting to go to the University of Chicago Celiac center to see if they can tell me I am not crazy for suspecting celiac.

Bascially I am just hoping to find out if anyone else has a similar story. Have any of you had similar symptoms? Am I crazy for feeling that Celiac is the right diagnosis here? My physicians seem to think I'm nuts but it just feels so much better to be gluten-free/soy free/ dairy free. Any advice from the board would be appreciated. Reading all your posts has really helped.

Hello..and welcome!
It's very common to go unDXed or mis-DXed. They say the average prson takes around 11 years to get a correct Dx.
Like you, many Celiacs find out on their own that they're reacting to gluten. Many of us have additional intolerances.

Once you go gluten-free the tests will not detect it. The only test they can do is the genetic one, which doesn't always paint a clear picture either.

Most Dr.s think of Celiac disease as a rare thing. That's what they're taught in medical school. Add to the mix that 20-30% of us test negative in our blood work.

It's insulting to have Dr.s dismiss your symptoms or Dx. I've run across this myself. Even after getting a positive Dx for the long list of symptoms I had, my Primary care Dr. said he didn't agree with my Dx and wasn't willing to do the follow up blood tests to determine any vitamin/mineral deficiencies. I had the GI run the tests and got a new PCP. You are correct that vitamin levels get low due to malabsorption.

Stay 100% gluten-free, and stay away from your other intolerances too. You know your body better than any Dr.!
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#787416 Brilliant Brunette Liquid Shine Conditioner

Posted by Bubba's Mom on 13 April 2012 - 01:48 PM

I emailed asking if Brilliant Brunette was gluten-free, and this is the response I got:


"We appreciate your interest in Kao Brands.
I have had a confirmation from our formulations department that Brilliant Brunette Liquid Shine Conditioner does not contain any wheat protein or its derivative. However it does contain hydrolyzed silk protein.
I hope the information provided is useful for you.
If you have any other queries please do not hesitate to contact us on 0800 652 1496. We are open Monday-Friday 9am-6pm.
Thank you for the opportunity to be of service.
Yours Sincerely,
Amy Gorham
John Frieda Consumer Relations UK"

It kindof confuses me a little. Why would they specify that the product is free from wheat and "silk" but not barley, rye, or malt derivatives. To my knowledge silk is not even a grain.

Bottom line is, I'm not that smart, so I'm confused and not sure the product is safe.
I would like to continue using it but not if it might gluten me.

It's safe. Some hair care products contain wheat protein ingredients to fortify the hair. Rye or barley wouldn't normally be used in them, which is why they weren't mentioned.
They told you about the silk because it's what they use instead of wheat proteins.
Enjoy your shiny hair! :D
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#787223 Celiac Means No Coffee?

Posted by Bubba's Mom on 12 April 2012 - 06:27 PM

I wouldn't stop that morning cup of coffee just yet. :)

And you know how people say to us "I would DIE if I couldn't eat bread!" and we reply (to ourselves) "no you wouldn't." Well... seriously...I would DIE without my morning coffee. :P

(Go ahead, think to yourself "no you wouldn't." But I'm telling you that yes I would!) :lol:

I'm with you! I can live without bread..but they better not try to take my morning coffee away. :angry: :ph34r:
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#787009 My Sweet Ally Tore Her Ccl... :(

Posted by Bubba's Mom on 12 April 2012 - 06:38 AM

I know it's hard to take our babies in for procedures. If only we could explain it to them so they'd understand? :(
She'll be ouchy at first, but if she gets the spring in her step back she'll be so much better off!
Some people think Friday the 13th is a lucky day. I hope it will be for you and Ally. :D
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#785483 Teeth Cleaning At Dentist's

Posted by Bubba's Mom on 05 April 2012 - 12:21 PM

I've had my share of dental work. When I was first DXed I was due for a cleaning and check-up. When I called to make the appointment I told the Dentist about my DX and asked if she could check for gluten ingredients. She was glad I mentioned it ahead of time so she could check and said there was nothing that should bother me when I went in.

I just got a crown redone too, and didn't react to anything...other than the bill. :o

*A funny side note...my Dentist questioned if I had any autoimmune issues because of the enamel on my teeth long before any Dr. Dxed Celiac!
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#785194 Biopsy Question

Posted by Bubba's Mom on 04 April 2012 - 06:00 AM

I'll keep this short and sweet. My son had a biopsy (resulting from severe reflux) which showed blunted villi and lymphocytes however his blood tests were negative with the exception of low IGA and IGG. The GI said it was nothing to worry about and to resume a normal diet. Since going gluten-free my son has solid poops and is much happier. We are even weaning him off one of his reflux meds. The pediatrician diagnosed him with celiac and is sending me for a second opinion. My question is: what is a "positive biopsy"? What exactly does it show? I understand the bloodwork is not accurate in making a diagnosis but what does the biopsy have to show for it to be celiac? Thanks!

Having a low IGA and IGG would make the blood tests inaccurate. The biopsy shows villi damage, which would suggest Celiac, along with him doing better off it.

Dairy and soy intolerance can cause villi damage, along with a few other things, but gluten is the most common cause.

http://www.celiac.co...illi/Page1.html
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#783593 More Progress

Posted by Bubba's Mom on 28 March 2012 - 07:58 AM

I guess I really should try to stop stressing about things that I can't control. I had an appointment to go to counseling to deal with the stress and anxiety, but I got extremely anxious about it and we cancelled. My two daughters and I started learning to sign using Signing Time about 2 years ago when the youngest was 6 months old and we found out about her hearing. My husband sort of tried, but didn't think it was that big of a deal and no one else in the family has even attempted to learn. I talk with my hands to her all the time even when I'm not constantly signing and I realized that those are the things she responds to because if she isn't looking at you when you talk to her in a normal voice you might as well be talking to a brick wall. After her appointment today I am going to call Early Intervention because they told me that if she has a doctor that evaluated her then they just need a letter and it shortens the evaluation process.

Learning not to worry about things you can't control is really hard. Some of us seem to be hard wired with a "worry gene"?
You have such a full plate right now! Even so, you've taken steps in the right direction towards helping your daughter, and at the same time steps towards working through your own health issues...while taking classes and being a parent? It boggles my mind! :blink:

I'm happy to know it looks like there's no infection and your daughter's ear will heal. Getting early intervention will help a lot too.

Counseling would be beneficial with all that's going on I think? Maybe you could find a counselor through the hearing loss intervention people?

A good counselor should be non-judgemental. I'm so sorry you've had bad experiences in the past. Some counselors don't understand that self-hurting behavior is caused by a deep pain inside that doesn't make sense to the sufferer. Cutting (or self harm) gives almost a sense of relief, because you can see the cut and know there's a reason for the pain. There's also a sort of endorphin release from it?
That's not your issue now, so maybe you won't even have to bring it up..unless you're getting those feelings again?
More hugs coming your way...
(((hugs)))
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#783584 Afraid To Eat

Posted by Bubba's Mom on 28 March 2012 - 07:17 AM

Hi... I've been following strict gluten-free diet and no dairy, no soy (as per kindly suggested by community). The suggestions I have received have been very helpful. I find myself feeling afraid to eat anything outside of the coconut milk, and I add fruit (which I freeze) and blend into shakes. That is a mainstay meal. I tried a sweet potato and became very itchy so I will eliminate that for now. Going to try to saute some lean natural chicken and fresh spinach. I am just so afraid to try even the gluten free rice. The week that I have been successful with no gluten has been great with the exception of those sensitive breakthrough things I wasn't aware of and have now eliminated so I read one person recommended no eggs, but another said eggs were okay. I don't eat any bread, dairy, soy, losing a lot of weight but I don't mind just getting scared not sure what to eat. Please help. Getting lost again. :(

I strongly recommend keeping a food log. Write down what you eat, and note any symptoms you're feeling. Many food intolerances can have delayed reactions, so it makes it easier to put the puzzle of what you can safely eat together.

You may have had a bad reaction after eating a sweet potato, but it may have been that the starch was hard to digest? If you added a digestive enzyme, the sweet potato may be ok? Many of us find that we need the enzymes at first.
Also, take a good probiotic. It helps balance the gut flora, so you don't have reactions to foods because of that.

I get bad reactions to some foods, and then find they're ok if I try them again. Maybe it's from combining things that are harder to digest, or cause reactions when blended? I have to get a bad reaction several times before I remove it from my diet.

While in the healing process, your system will be constantly changing. That's normal. Don't be afraid to eat!
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#783352 More Progress

Posted by Bubba's Mom on 27 March 2012 - 09:55 AM

Two months ago when I started this thread I was feeling so hopeful about everything, it's funny how much things can change in that amount of time.

We have been gluten free, soy free, etc for over a year and I have been pretty much sugar free for almost 6 months and now I am having trouble with it. I think more the sugar since I can't really even eat fruit and I can try to adapt most things to gluten free, but it's not that easy with sugar. I'm sorry I just have to vent here because as much as my husband tries he can't understand why I cry because I can't just happily munch away on fruit or something like that. I am tired of thinking of everything that I put in my mouth because I just want to be able to focus on not being so so tired. I want to be able to just focus on my classes (which somehow I am passing thankfully) and to focus on my children.

Which is a whole other point right now, I think I am so upset and having to worry about my food since I am so worried about my daughter. She has to go to an ENT tomorrow because she has a perforated ear drum in the ear that her hearing is already bad (if I'm not mistaken her hearing in her left ear was only at 50% and only 75% in her right ear at 6 months and the audiologist said it would most likely worsen), she doesn't respond to us talking if she can't see us unless we yell and she keeps asking us to turn things up. I am worried about her, she is only 2 and has already had to go through so much. And I have to try and hold it together because my husband just says that she already knows some sign language (we found out about her hearing deficit originally when she was 6 months old), but it's not the point I want my daughter to be able to hear me say that I love her and that I am proud of her. Then there is my younger daughter who is so upset about her sister because she is the one her perforated her ear drum. She wanted to play doctor since she wants to be a pediatrician and put the thermometer (one of the underarm ones) in the ear to check the patients temp so she feels guilty for doing it and I feel guilty because I was in the shower when it happened.

I'm sorry about venting about this on here, but I'm just tired of everything right now and my husband just isn't getting it.

The food restrictions get old don't they? My hubby can't understand why I feel so sad when I see him sitting there munching away on chocolate, or other things I can't have, You have it even worse than me, because I can have sugars, just not anything with soy. People who haven't been through it, just can't understand it. They just can't relate.

The added stress of worrying about your daughter is hard too. Perforated ear drums heal don't they?
I hope this is just a passing thing that gets better for her. These accidents happen. Don't feel guilty. We just can't watch our kids 24/7..and would never think to warn our kids against doing something like that.

As time goes on..if your daughter's hearing worsens..don't ever doubt that she'll know you love her. or are proud of her. There will always be a way to say it.
(((hugs)))
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#782803 Determined To Try Gluten Relief

Posted by Bubba's Mom on 25 March 2012 - 12:54 PM

I ditto what SkyLark and Irish Heart have said..except I would have sworn some too! I'm beginning to wonder if you're just a shill trying to sell this rediculous product? SURELY you can't be that thick headed? :blink:

I'm just not going to respond any more to this nonsense!
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