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Coping With Increased Sensitivity- Any Success Stories?


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#1 dws

 
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Posted 05 September 2011 - 10:55 AM

I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet. That lasted about 1 1/2 years and then I started having problems again. My symptoms are and always have been intestinal distress and diarrhea and the depression that goes along with not feeling well. I have had some success by getting away from processed gluten-free foods and taking more precautions in a very gluten filled kitchen that I share with my family of five. I have not been able to bring myself to make our house gluten free due to not wanting to put my family through that. Any success that I have seems to be only temporary and then things get worse again. Have any of you gone through feeling better, getting sick again and then finding your way back to wellness? If so, I would love to hear your story. I welcome responses from everyone but am particularly interested in hearing from non-celiacs since genetic testing has my doctor pretty sure I am not celiac. Blood testing was negative for celiac, but an Igg score was 84 when anything above a thirty was positive. Never got a biopsy prior to gluten-free diet. The blood work was done prior to gluten-free diet, resulting in the initial diagnosis and prompting the gluten-free diet. The genetic testing was done fairly recently. Sure could use a mentor who has already been down this road. Taking some fairly radical precautions and still not staying well has me feeling a little discouraged.
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#2 pricklypear1971

 
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Posted 05 September 2011 - 11:48 AM

How are you doing your family a favor by getting glutened at home?

I understand your thinking (I thought the same) til I realized a sick mom is no good for anyone, I let them get their fixes somewhere else that doesn't involve me. I take that night of no cooking and relax.

And yes, after you are gluten-free people say you become more sensitive. Just how it goes, I guess.
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Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 T.H.

 
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Posted 05 September 2011 - 04:49 PM

Let me double check something:
You had a positive blood test, yes? Then tested negative on the genetic tests. Is that right?

If that's true, but only if, from everything I've read, you actually are probably a celiac. The one study I read on gluten intolerance showed that those with gluten intolerance don't get the same antibody respone as celiacs do. Your blood test wouldn't have been positive.

And for the genetic tests, there's a few people here who have mentioned that labs don't actually test for all the genes that can cause celiac disease, just the most common ones. I believe one gal here ended up with one of the rarer genes, so it wasn't showing up in the genetic tests, either. Might be worth your while to find out what genes were tested for, and find a full list of genes.


For my family, we had to go gluten free completely to keep myself and my daughter safe. We were both getting sick frequently with a shared household. And going gluten free, we discovered that my son has issues with gluten too, even though he tested negative: he had symptoms that went away when he ate gluten free.

On top of that, we live in the USA, so our gluten-free food isn't regulated. We ended up calling all our gluten-free companies to make sure they tested their food for gluten. Quite a few of the regular names brands did not do so, so we dropped them. That helped avoid what I now believe were periodic contaminated batches. My daughter also started having problems with foods made in facilities that also processed wheat - not all the time, but periodically my daughter would get sick from these brands, over and over.

So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too.

We also discovered that my daughter is an oat sensitive celiac, so some brand names are no good for her because they use gluten-free oats, or they have gluten-free oats processed to near their other foods. Taking care of that helped even more.

We had to change a lot to stay well. We cleaned out the car and scrubbed it down, and no one is allowed to bring gluten into it. We used to have friends over who would bring their own food sometimes, but we would get sick after they came to visit, almost every time, so now we don't allow gluten in the house.

I hate feeling like some kind of gluten Nazi, but honest to God, every time I have a moment where I think maybe I'm being too strict, we relax our standards and start getting sick again. I don't think everyone is as sensitive as my daughter or I, but I do think that sometimes, you simply have to take a deep breath and realize that whether you want it to be true or not, you may need some changes in your environment that require assistance from the whole family.


It helped when I thought of it in terms of what I would do for kids. If one of them was allergic to, say, peanuts, would I make the house peanut free? If they got sick from little amounts, I definitely would. If my child was blind, would I keep the furniture in the same places and make sure all the clutter was picked up off the floor? Of course. When there are physical limitations involved with the family, we adjust, because we're doing it for someone we love, right?

Your family loves you, too. If they were honest, I'm sure they would rather have a healthy, healed parent who will be with them for many more years than have gluten in the house.

Although they might whine about it a lot in the beginning. ;)
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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


#4 weluvgators

 
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Posted 06 September 2011 - 07:29 AM

Our family had it a bit easier because it was a very young child that had obvious issues that we were changing our household and lifestyle for . . . somehow that made it "easier" for me. But I am SO GRATEFUL that we followed her lead. We have implemented many of the same things as T.H. - she summarized it up so well! We are positive gene-wise. But serum screenings to date have been "doing really well on the gluten free diet" kind (aka no serum antibodies in the two celiacs screened after years on a gluten free diet). Secretory (stool for us) screenings have been mainly positives with one negative (accomplished by me after getting super, super strict - finally!). My kids take a bit more liberty with "gluten free" processed foods at times than I do - much easier for them to be sick and me take care of them than me get sick - that is when it really sucks - for everyone!! But that all changed quite a bit when our older DD who went gluten free for her sister ended up with multiple hospitalizations for idiopathic complications following a few days of unusual for her consumption of "gluten free" processed foods! And after my family has been able to see how sick ridiculously low levels of gluten make me (and them!), they are fully on board with helping me maintain wellness!

And the success story in this all . . . we had a sleepover for my almost 8 yo DD, and she invited her friends. They are also gluten sensitive, but not as methodical in their gluten elimination as we are. Their dad still eats gluten and had some crackers sitting in the car when he drove them over. His DD told him that he could NOT bring them in our house! I thought that was AWESOME!! We have a very strict gluten free home policy, and I was so happy to have someone else looking out for me (she is 9 yo - pretty awesome, I must say) :D .

Another success story is that in my small town (6500 people), we have found at least two other families with gluten super sensitivity (each of us has different reactions too, and one of the other families has multiple super sensitives)! We also have found others in our community that maintain a gluten free diet, and they respect that some of us are super sensitive (they also like to glean things from the super sensitives to help relieve their nagging issues ;) ). And they all have consistently become more and more gluten free. And it has been really fantastic to have had their support and friendship on this journey.

Since I was "asymptomatic" when I went gluten free for my DD, I was absolutely shocked and horrified when I started getting violently ill with incidental gluten exposure. It was awful. It took me years on the diet to even recognize that this gluten issue was mine to own, not just a convenience for my super duper silly DD. It was shocking and eye opening. I have had tremendous success in the past year helping achieve better management of our condition by building a medical team to work with us. It is definitely a process! And you wouldn't be the first to take your family and home gluten free for the sake of an individual. We are here to support you if you want! And, UGH, I so understand the getting better on the less than perfect diet, having it start to tank (actually mine never tanked like that, it would tank after I implemented more rigid protocols for myself due to my nursing DD!), taking it to the next level, trying to resolve issues (that for me, I never, ever would have guessed were related to gluten, having them finally resolve when I had to get more super strict for my kids, feeling better, having symptoms keep lingering . . . . tweaking our ridiculously strict diet again . . . getting it all better . . . and now, I feel like I am coasting in a really great place *KOW* *KOW*!!! And, um, by "coasting" . . . that wouldn't really be an accurate description of all of the work that I have implemented related to food sourcing!! And the food sourcing chore just never seems to end . . . new season, new food, new supplier(s), changes in manufacturing - never ending stuff . . . must have fun doing it, eh? B)

And, it may be worth noting, my depression associated with gluten exposure is more than just depression from not feeling well, so you may want to consider that the depression is a symptom of the gluten exposures themselves. I don't think that my family feels in any way deprived by living gluten free, as we are eating really, really well and having fun with it. And I love the idea of sending the family out while enjoying an evening to myself . . . but all of my kids are super sensitive, so that never happens for me! I would be rejoicing if I didn't feel so ultimately responsible for feeding all of my kids all of the time on the gluten super duper sensitive diet!! um . . . you may want to consider cleaning protocols if you do send them to the pizza parlor for that evening to yourself. You may just want to send them in to shower, brush teeth and put on pj's when they get home - then snuggle!

Good luck figuring out what works well for you and your family!
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#5 dws

 
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Posted 06 September 2011 - 02:54 PM

Let me double check something:
You had a positive blood test, yes? Then tested negative on the genetic tests. Is that right?

If that's true, but only if, from everything I've read, you actually are probably a celiac. The one study I read on gluten intolerance showed that those with gluten intolerance don't get the same antibody respone as celiacs do. Your blood test wouldn't have been positive.

And for the genetic tests, there's a few people here who have mentioned that labs don't actually test for all the genes that can cause celiac disease, just the most common ones. I believe one gal here ended up with one of the rarer genes, so it wasn't showing up in the genetic tests, either. Might be worth your while to find out what genes were tested for, and find a full list of genes.


For my family, we had to go gluten free completely to keep myself and my daughter safe. We were both getting sick frequently with a shared household. And going gluten free, we discovered that my son has issues with gluten too, even though he tested negative: he had symptoms that went away when he ate gluten free.

On top of that, we live in the USA, so our gluten-free food isn't regulated. We ended up calling all our gluten-free companies to make sure they tested their food for gluten. Quite a few of the regular names brands did not do so, so we dropped them. That helped avoid what I now believe were periodic contaminated batches. My daughter also started having problems with foods made in facilities that also processed wheat - not all the time, but periodically my daughter would get sick from these brands, over and over.

So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too.

We also discovered that my daughter is an oat sensitive celiac, so some brand names are no good for her because they use gluten-free oats, or they have gluten-free oats processed to near their other foods. Taking care of that helped even more.

We had to change a lot to stay well. We cleaned out the car and scrubbed it down, and no one is allowed to bring gluten into it. We used to have friends over who would bring their own food sometimes, but we would get sick after they came to visit, almost every time, so now we don't allow gluten in the house.

I hate feeling like some kind of gluten Nazi, but honest to God, every time I have a moment where I think maybe I'm being too strict, we relax our standards and start getting sick again. I don't think everyone is as sensitive as my daughter or I, but I do think that sometimes, you simply have to take a deep breath and realize that whether you want it to be true or not, you may need some changes in your environment that require assistance from the whole family.


It helped when I thought of it in terms of what I would do for kids. If one of them was allergic to, say, peanuts, would I make the house peanut free? If they got sick from little amounts, I definitely would. If my child was blind, would I keep the furniture in the same places and make sure all the clutter was picked up off the floor? Of course. When there are physical limitations involved with the family, we adjust, because we're doing it for someone we love, right?

Your family loves you, too. If they were honest, I'm sure they would rather have a healthy, healed parent who will be with them for many more years than have gluten in the house.

Although they might whine about it a lot in the beginning. ;)

Thanks for the advice, Shauna. We have opened up the conversation in my family about a gluten free house.. We are going to try some dedicated space first and see how that goes. The genes I was tested for were HLA DQ2 and DQ8. The IgG test is not specifically diagnostic of celiac disease although 20% of people with celiac test positive for those antibodies. According to my doctor, Alessio Fasano with the Center for Celiac Research, some people who do not produce the antibodies detected with the TtG testing, produce IgG antibodies instead when they have celiac. He is the one who decided to go ahead with genetic testing. You are correct, the negative results do not mean that he is 100% sure I do not have celiac. He put the probability against it as about 95%. I guess one of the reasons I tend to doubt that I have celiac is the fact that I recovered so quickly when I started my imperfect gluten-free diet. It only took about 2 days for my intestinal problems to totally disappear. From what I have read, celiacs take some time to heal and recover more gradually. I am sure individual experiences vary. Thanks again for your time. It's great to hear about journeys towards success.
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#6 Sammyj

 
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Posted 07 September 2011 - 01:35 AM

Shauna

"So we did a second round of calls, winnowing down our foods to those in gluten free facilities only. That helped some too."

Would you be so kind as to list those companies?

Thanks
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#7 Fairy Dancer

 
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Posted 07 September 2011 - 02:23 AM

I tested negative on the one test for celiac disease that I had, which my dr agreed to do because I have a brother who is diagnosed with it (I have never had genetic testing done though) but have found that my symptoms have gradually improved on a gluten free diet anyway.

In the beginning improvement was very slow partly, I think, because I found out later that I was still consuming foods with gluten or wheat in (it was not in the ingredients list but they were not suitable for gluten sensitive people due to the manufacturing process...in one case it was a vegetable stir fry (with no sauce) of all things causing the problem!). I also found that I was having issues with other foods as well such as fresh sweetcorn on the cob and I recently had a bad reaction to a non food product...a nicotine patch...from which I am still recovering lol. Talk about feeling like death warmed up and having bad diarrhoea! However, I think it might be an allergic reaction in the case of the latter as I have had issues with certain brands of medical adhesives before and I also had a skin reaction to the patch as well as the upset system. I had similar problems with the gum as well (it burnt my mouth and was too painful to tolerate) so it looks like I will have to quit smoking cold turkey lol.

I do have other allergies (duck feathers, anti inflammatories, certain household cleaning products and I also respond badly to other types of medication) so I have never been sure if my reaction to wheat and gluten is a sensitivity, celiac disease or an allergy...

I did try putting wheat back in after going gluten free and had a bad reaction to it 4 times in a row...each time I had bad stomach pains, diarrhoea, acid reflux, fatigue, horrible vertigo, irritability, and nausea and on the fourth occasion some processed gravy actually brought me up into a rash...

Either way I avoid it now and stick to a whole foods only diet. My drs however still continue to put my gradually disappearing symptoms down to anxiety and depression. I still think the issue was and is food related.

Many of my symptoms have improved since my house has been gluten and wheat free etc, and some are still slowly improving, even if I am still not yet 100%.

It is worth making your house completely gluten free if you can as that minimises your risk of exposure. I avoid the stuff like its the plague lol.
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#8 dilettantesteph

 
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Posted 07 September 2011 - 03:13 AM

I originally felt so much better just eliminating cereal and bread. I thought it would be easy.
As I got more and more sensitive, I had to cut out more and more things. Reading here helped a lot at first. Back in those days there was no sensitive section and I didn't find any information about super sensitive celiacs. I stayed sick a long time not knowing what else to eliminate from my diet. Based on the information available on this board, everything I was eating was safe.

Finally I came into contact with other super sensitive celiacs and I got some information about shared facilities, and cross contamination. I learned about keeping track of foods and only adding one a week. We also became a gluten free household.

Now I am almost at the 4 year mark. I eat hardly anything processed. I grow much of my own food, spices etc. It's a lot of work, but I am experiencing a level of health that I wouldn't have thought possible before. I am so much stronger both mentally and physically. Still, I have problems with what I'd call "environmental gluten". When I go out, I might get glutened. Dr. Ford's "Gluten Free Planet" idea is the only way I'd be able to be always healthy.

Still, I did a mini triathlon summer before last and I beat a lot of non celiacs! I think that can be considered success!
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#9 color_me_confused

 
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Posted 07 September 2011 - 08:09 AM

I've been struggling for quite some time now with what seems to be an increased sensitivity to gluten. When I was first diagnosed about 5 years ago as non-celiac gluten sensitive, I responded incredibly well to a less than perfect gluten-free diet. That lasted about 1 1/2 years and then I started having problems again.


Non-celiac gluten intolerance is considered to be about 30 years behind celiac disease in terms of research, quoting a researcher from memory. You can find papers published in the last few months that are establishing non-celiac gluten intolerance as a separate disease category.

There's always the possibility that you're sick with something else entirely - candida, bacterial overgrowth, other food intolerances or allergies, etc., or that the less-than-perfect gluten-free diet isn't good enough anymore.
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#10 dws

 
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Posted 07 September 2011 - 02:54 PM

I originally felt so much better just eliminating cereal and bread. I thought it would be easy.
As I got more and more sensitive, I had to cut out more and more things. Reading here helped a lot at first. Back in those days there was no sensitive section and I didn't find any information about super sensitive celiacs. I stayed sick a long time not knowing what else to eliminate from my diet. Based on the information available on this board, everything I was eating was safe.

Finally I came into contact with other super sensitive celiacs and I got some information about shared facilities, and cross contamination. I learned about keeping track of foods and only adding one a week. We also became a gluten free household.

Now I am almost at the 4 year mark. I eat hardly anything processed. I grow much of my own food, spices etc. It's a lot of work, but I am experiencing a level of health that I wouldn't have thought possible before. I am so much stronger both mentally and physically. Still, I have problems with what I'd call "environmental gluten". When I go out, I might get glutened. Dr. Ford's "Gluten Free Planet" idea is the only way I'd be able to be always healthy.

Still, I did a mini triathlon summer before last and I beat a lot of non celiacs! I think that can be considered success!

Thanks for sharing your experience Steph. You have been a lot of help to me on a few occasions. I definitely do better if I stay away from processed foods altogether. I have been keeping a food diary. I'm one of those thin guys who craves carbs, so processed foods are always calling me. I had a good couple of good days and a really fantastic day yesterday as a result of behaving myself for a few days. Ate some pancakes from my own mix of Bob's Red Mill Flours and had a so-so day today. I thought his stuff was ok, but I may now have to avoid them. Could have been the Rumsford baking powder. Who knows. It would take a lot of trial and error to figure out since there are about 6 ingredients to my pancakes. By a so-so day I mean moving in and out of a jittery kind of intestinal pain. no dia. The good days I have give me a lot of hope that feeling good can be maintained. Just gotta figure it out. Congrats on the Mini Triathalon! It sounds like you have got this thing on the run instead of the other way around. I think you super sensitives could be a lot of help to all of us if you shared some of the products that actually do not bother you. I know everyone's sensitivity levels are different, but things that do not bother the super sensitives would probably work for the majority of us. I have seen a list of test results, but a list of foods you never react to could be helpful to others. What do you have in your pantry? (probably nothing processed, like you said)
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#11 dilettantesteph

 
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Posted 08 September 2011 - 04:12 AM

What do you have in your pantry? (probably nothing processed, like you said)

Wegmans tangerine lime sparkling water, Wegmans organic coffee beans, Wolff's whole buckwheat grouts, Metaxa ouzo, Volcano Island white honey, Field Day Mediterranean sea salt, Bariani olive oil, Ithaca Milk Co. dairy (milk, cheese, and butter), Black Jewell popcorn, Nature's Earthly Choice quinoa, but it has to come from a particular dedicated facility. In the east, where I live, the facility is mixed, so I have a friend ship it from back west. I can also manage bananas, Wegmans organic carrots, pork packaged at the meat distributor, and shrimp and scallops directly from their shipping containers.

I've been doing a lot of gardening for more produce, and I can manage some things at the farmer's market.

It's a short list, but I'm more sensitive than most.

I had to cut out BRM early on, but I have a sensitivity to oats.
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#12 dws

 
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Posted 08 September 2011 - 05:40 PM

Wegmans tangerine lime sparkling water, Wegmans organic coffee beans, Wolff's whole buckwheat grouts, Metaxa ouzo, Volcano Island white honey, Field Day Mediterranean sea salt, Bariani olive oil, Ithaca Milk Co. dairy (milk, cheese, and butter), Black Jewell popcorn, Nature's Earthly Choice quinoa, but it has to come from a particular dedicated facility. In the east, where I live, the facility is mixed, so I have a friend ship it from back west. I can also manage bananas, Wegmans organic carrots, pork packaged at the meat distributor, and shrimp and scallops directly from their shipping containers.

I've been doing a lot of gardening for more produce, and I can manage some things at the farmer's market.

It's a short list, but I'm more sensitive than most.

I had to cut out BRM early on, but I have a sensitivity to oats.

Thanks. I wish I had a Wegman's near me. I live near Richmond, VA. There are Wegman's north of here. So you do ok with corn? I have been staying away from it, but I am not sure I really need to. I have trouble with oats too.
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#13 Roda

 
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Posted 08 September 2011 - 11:14 PM

Thanks. I wish I had a Wegman's near me. I live near Richmond, VA. There are Wegman's north of here. So you do ok with corn? I have been staying away from it, but I am not sure I really need to. I have trouble with oats too.

I would drop all Bobs Red Mill products. I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products. Ugg..I reacted terrible!
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#14 dilettantesteph

 
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Posted 09 September 2011 - 03:55 AM

So you do ok with corn? I have been staying away from it, but I am not sure I really need to.

I have problems with processed corn, but not corn itself. I bought a big drum of corn and there is about one wheat berry per quart. Not wonder I have problems with processed corn!
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#15 dws

 
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Posted 09 September 2011 - 06:57 PM

I would drop all Bobs Red Mill products. I am one who reacts to gluten free oats and I react to all BRM because of the gluten free oat contamination. Last Jan. I ate at a dedicated bakery that used BRM products. Ugg..I reacted terrible!

Any luck with other brands?
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