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Additional Things to Beware of to Maintain a 100% Gluten-Free Diet

  • Rice and soy beverages because their production process may utilize barley enzymes.
  • Bad advice from health food store employees (i.e., that spelt and/or kamut is/are safe for celiacs).
  • Cross-contamination between food store bins selling raw flours and grains (usually via the scoops).
  • Wheat-bread crumbs in butter, jams, toaster, counter, etc.
  • Lotions, creams and cosmetics (primarily for those with dermatitis herpetaformis).
  • Stamps,
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    envelopes or other gummed labels.
  • Toothpaste and mouthwash.
  • Medicines: many contain gluten.
  • Cereals: most contain malt flavoring, or some other non-GF ingredient.
  • Some brands of rice paper.
  • Sauce mixes and sauces (soy sauce, fish sauce, catsup, mustard, mayonnaise, etc.).
  • Ice cream.
  • Packet & canned soups.
  • Dried meals and gravy mixes.
  • Laxatives.
  • Grilled restaurant food - gluten contaminated grill.
  • Fried restaurant foods - gluten contaminated grease.
  • Ground spices - wheat flour is sometimes used to prevent clumping.

Celiac.com welcomes your comments below (registration is NOT required).





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53 Responses:

 
Solange Milan
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
22 Oct 2007 1:00:05 AM PDT
Thank you so very much for all your hard work in presenting this information.
I join all those who appreciate you!

 
Miriam Romanowski
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said this on
29 Jun 2013 7:49:25 AM PDT
As a newly diagnosed gluten intolerant person trying to navigate the need to be gluten-free, I agree that you have done so much research and work. Thank you from the bottom of my heart!

 
gailkezele
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
22 Oct 2007 9:18:00 AM PDT
Found your site to be very helpful. I am recently diagnosed and I am trying to trace a hidden gluten that I am ingesting unknowingly.

 
Alecia Rochelle
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said this on
24 Oct 2007 11:15:25 PM PDT
Great additional information! Thanks for your continuing research.


 
an unknown user
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said this on
30 Oct 2007 8:31:27 AM PDT
Another resouce to add to the arsenal. Thanks!

 
Jette L Mortensen
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said this on
02 Nov 2007 1:12:51 PM PDT
I appreciate your reseach. Hidden gluten can be tricky.

 
Paul
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said this on
06 Nov 2007 12:18:30 PM PDT
Excellent site. I'm newly diagnosed and have learned more here than I have at any other site.

 
Sherida Jett
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said this on
06 Nov 2007 3:41:42 PM PDT
Diagnosed June '07, 3-month testing for anemia & celiac marker showed marked improvement. I'd been drinking Rice Milk for this past week & used up the end for gluten-free pancakes yesterday. I knew I'd been getting sicker again, but couldn't pinpoint the culprit. Saw this article last night, shocked to see Rice Milk at the top. Sure enough, when I retrieved the carton from the garbage, it was stated at the end of ingredients! I'd been so diligent all summer, how did I miss it? Just proves you should never let down your guard. I read labels throughout the grocery store, but how this got by my scrutiny, I'll never know!

 
Diane Fields
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said this on
06 Nov 2007 7:51:57 PM PDT
Enjoy this newsletter a lot. Not too much to take in and gives me choices of what to read.

 
Rosalina Melendez
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said this on
09 Nov 2007 9:15:36 PM PDT
Very good information. I have to be more alert about what I buy.

 
tina ellis
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said this on
10 Nov 2007 10:45:20 AM PDT
I have celiac disease and I am constantly worrying about different products, this is very helpful. I read labels and sometimes find it confusing. I have been on a gluten free diet since 2003. My celiac disease is called 'refractory,' but I manage. This site is very helpful...thanks.

 
Sandy
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said this on
06 Feb 2013 7:41:10 AM PDT
What do you different from other people with celiac disease since you have refractory celiac?

 
Claire Panke
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said this on
11 Nov 2007 8:16:53 AM PDT
Some brands of rice milk do NOT have the barley that is found in Rice Dream. Westsoy is made without using barley.

 
Hayat Yazidi
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said this on
13 Nov 2007 1:12:52 PM PDT
Excellent site as I'm newly diagnosed with celiac disease, though very careful I'm not always well after going to restaurants--I insist on having only grilled meat and vegetables...

 
Carol the Dabbler
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said this on
26 Nov 2007 1:33:03 PM PDT
According to the manufacturer's web site all varieties of Rice Dream non-dairy beverages and all varieties of Soy Dream non-dairy beverages are currently GLUTEN-FREE.

 
louis
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said this on
27 Nov 2007 8:29:40 PM PDT
THANK YOU

 
Kathryn
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said this on
01 Dec 2007 11:16:23 AM PDT
Rice Dream states directly on the packaging that it is 'gluten free.' .

 
Barbara
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said this on
21 Dec 2007 4:22:26 AM PDT
I called the manufacturer of Rice Dream, and was assured that their (at least the organic variety) rice beverage was completely gluten-free. And as for malt flavoring, check with the manufacturer again, as some malt flavoring is from corn, not barley. It's annoying to have to make calls, but better safe than sorry, and sometimes you get the happy surprise that a seemingly 'unsafe' product is really safe.

 
Eddie Acevedo
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said this on
04 Feb 2008 6:17:38 AM PDT
I have been diagnosed with Celiac since 2004 and never thought of the toaster oven as being a gluten carrier. Thank you so much for the tip. It's so hard to maintain a 100% gluten free diet in this high gluten society.

 
Nancy Adams
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said this on
22 Feb 2008 6:38:33 AM PDT
What a great site, and very helpful information. My daughter who is 14 just got diagnosed last month and I also now have to read all labels and help her make sure that she is following the diet as best as she can. Thanks for the great work......

 
cluppins

said this on
27 Feb 2008 2:24:52 PM PDT
Rice Dream irritates my stomach. I use West Soy Rice beverage, plain. It tastes like real milk. Don't forget to shake the rice containers before drinking because of settling.

 
Doug Newsam
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said this on
13 Apr 2008 7:17:29 AM PDT
Many thanks for this column! It is a wonderful source of invaluable information.

 
Virginia Wood
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said this on
23 Apr 2008 8:12:59 PM PDT
Your site is very helpful. Thank you for sharing all the information with us. I am newly diagnosed with this wheat gluten allergy.

 
melenda casey
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said this on
11 May 2008 9:33:06 AM PDT
Thanks you for this site, it is very helpful. keep up the good work

 
Paula
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said this on
28 May 2008 7:19:29 PM PDT
Re: Cluppins and Rice Dream irritating stomach. You're tummy may actually be bothered by the thickener used in many alternative 'milks' such as Rice Dream - carrageenan. My doctor brought this to my attention, along with problems attached to sugar substitute Chicolin. Both can cause cramping and stomach upset in general. Both don't bother my husband but they did me.

 
Paula

said this on
28 May 2008 7:32:19 PM PDT
Oops. I didn't realize that Rice Dream actually has barley in it. I was diagnosed AFTER I had stopped drinking it. However, my comments still stand for anybody out there regarding Chicolin and Carrageenan. Cheerio.

 
Melinda
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said this on
20 Jul 2008 10:11:15 AM PDT
Thank you so much for this! I have to use laxatives fairly regularly and never thought they might not be Gluten-Free. I also had no idea about toothpaste/mouthwash. Thanks.

 
silvia
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said this on
09 Aug 2008 11:39:11 PM PDT
Excellent, all that you say, I've been on a gluten free diet since 2004 and all the things you say in the beginning made me sick constantly, until I realized and read in this site the horrible truth, I hope our family and friends understand these alerts too.

 
Kirsten Staples
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said this on
04 Oct 2008 9:13:53 AM PDT
Thanks for the info. Pay attention to Licorice. Every brand of licorice commonly found in the store lists wheat flour as a main ingredient. I never thought to check it because it wasn't a starchy crispy snack.

 
Taylor
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said this on
14 Oct 2008 8:51:10 PM PDT
This is really good--it was not long ago that I was told that I had to go on the gluten free diet. I get so sick when I eat food and this is a great web site that has helped me choose better foods to eat.

 
poesy
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said this on
14 Nov 2008 4:56:30 PM PDT
West Soy and Rice Dream both have a very small amount of gluten from barley. The FDA laws allow the gluten free label for small amounts of gluten. This is bad for those who can not tolerate small amounts of gluten.

 
Linda
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said this on
31 Jan 2009 7:23:32 PM PDT
I would like to add that some drywall may have gluten in it. I kept getting sick at work because the building is being renovated. I kept saying that it has to be the dust from the drywall as it was everywhere. No one believed me but I just read it on another site that there is gluten in drywall.

 
Liana
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said this on
18 Mar 2009 9:13:39 AM PDT
I always wondered why I'd still feel bad after having Rice Dream (never tried the Westsoy brand). Thanks for continuing good updates and help!

 
Shirley Walker
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said this on
01 Dec 2009 3:49:38 PM PDT
I HAVE LEARNED A LOT ABOUT MY ALLERGIES, SYMPTOMS AND DISEASES.

 
Sally Collins
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said this on
03 Jan 2010 11:35:27 AM PDT
I would only drink the potato vodka as others definitely don't work for me.

 
Pat Miller
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said this on
24 Jan 2010 5:37:21 PM PDT
I love herbs and spices of all kinds. I don't want to give them all up because some may have wheat in them. How do I know which ground spices have wheat? None list it on the label.

 
Dianne Bird
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said this on
15 May 2010 2:38:59 AM PDT
As a Ceoliac patient I am always very careful. Imagine my surprise when a visit to the dentist for a Crown left me unwell, no toothpaste had been used. Thanks to the practice manager who contacted all the suppliers of the products that had been used we found the culprit. So be very aware and make sure your dental practiced checks first.

 
SweetDee
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said this on
28 Jul 2010 10:12:48 AM PDT
ugh! I love mayonnaise.... drat!

 
Jolhowell
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said this on
18 Oct 2010 8:24:50 PM PDT
Hellman's mayonnaise says it's "gluten free" on the ingredients list.

 
Judy
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said this on
16 Apr 2012 4:34:43 PM PDT
I love mayo too and Cain's Mayonnaise (found in the New England states is gluten free) I live in Georgia and have someone I know up there send me 2-3 large jars in the cooler weather to get me thru.

 
Zana weber
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said this on
26 Aug 2014 7:23:33 AM PDT
I believe Hellmann's is also gluten free.

 
Debby M
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said this on
07 Aug 2010 2:26:23 AM PDT
Where have you been for the past 2 years? I've been trying things hit or miss weekly. I've found if I make it it's gluten free. I'm still looking for a list of chain restaurants that have gluten-free menus.

 
Melanie
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said this on
06 Oct 2010 10:03:37 AM PDT
Interesting....

I don't have celiac (tested by endoscopy), but I certainly have IBS and a certain amount of GI gluten intolerance, so I am keeping my gluten intake very low.

BTW: San J Brand Tamari soy sauce is GF and I think it's the most delicious available - better than the kinds including wheat.

Mel

 
Lisa Lou
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said this on
10 Dec 2011 9:35:04 PM PDT
To Debbie M, a friend tipped me off to good restaurants that have gluten-free menus or are open to customize meals for various health needs, she suggested vegan restaurants. I have also found Thai and Vietnamese restaurants are good. I also have to stay away from dairy and MSG, so finding restaurants has been challenging and my work keeps me on the road a lot. Hope this helps.

 
Lisa Lou
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said this on
10 Dec 2011 9:44:22 PM PDT
My Naturepath suggested I read Living Gluten-Free for Dummies, it is an excellent book and led me to your website. This is my first time viewing the blog and reading your information. Thank you for having this website, some very good info here. Just a note for those who have been tested for celiac by endoscopy you may want to read chapter 2 of Living Gluten-free for Dummies.

 
Tanibee
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said this on
16 Jan 2012 11:47:24 AM PDT
Thanks! This site is GREAT!

 
Colleen
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said this on
29 Feb 2012 5:16:26 PM PDT
So happy to be here! Keep up the GREAT work!!
You will be with me every inch of the way healing; mentally, physically and Spiritually!!

 
Louise
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said this on
22 May 2012 10:02:09 AM PDT
I rushed to my rice milk to discover it looks good! Trader Joe's organic rice drink in wonderful cartons to store unopened in the pantry.

 
Maia
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said this on
03 Sep 2012 1:40:50 PM PDT
Please be careful of liquors, also! Not because of the distillation process (which does eliminate the gluten), but from the caramel color, which is added to maintain a consistent color between batches in mass-produced liquors. I only discovered this after consistently getting sick from tequila and sherry in my own cooking. After contacting the manufacturers, I discovered the caramel color problem... I now avoid any liquor with a brown or yellow color, unless I have contacted the manufacturer and found out it is safe.

 
Heather Siladi
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said this on
14 Oct 2012 11:07:59 PM PDT
This thing just gets more daunting.

I thought I was on top of things, I no longer get GI distress (which was my normal for about a decade). I no longer fall off the wagon with "eh, it's worth a belly ache," followed by, "well, the damage is done, since I'm headed to bathroom all night, I may as well enjoy a piece of cake."

So I've been super good, I don't even have the cravings I used to have. I go to the doctor because I'm exhausted, achy, have muscle twitches and cramps... and it turns out a lot of important electrolytes are low (sodium, potassium, magnesium, and a few other are borderline low). So for lack of any other explanation, I'm thinking I must be eating these hidden glutens.

So, am I going to have to quarantine a cupboard in my house and never eat at a restaurant?

I don't even know if this is a question or a rant.

Does anyone else here ever feel like their diet is an inconvenience for their whole family?

 
Anna
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said this on
31 Jul 2014 4:21:35 PM PDT
I know how you feel. My fiance is Italian and loves his toast and pasta. I try so hard to keep my diet gluten free, or else I'll have the GI problems and extreme dizziness that turns my vision gray, headaches, weakness, pain, and even moodiness.

It's just hard when other people don't understand how many things contain gluten and where they hide.

He tries to understand me, but it's just beyond comprehension for someone without our problems. I'm not forcing him to stop eating toast or anything, it just feels like I need to cook two separate meals every once in a while to keep the peace.

 
Julie
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said this on
07 Sep 2013 12:34:33 AM PDT
Really appreciate all this free information. Thank you.

 
Deb
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said this on
27 Feb 2015 12:52:22 PM PDT
Thank you! I've just been diagnosed and I already feel more informed and know many things to watch for.




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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.