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Other Intolerances


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11 replies to this topic

#1 jcstepmom28

 
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Posted 23 August 2012 - 11:04 AM

I found your forum through google. I had an (Company Name Removed - They Spammed This Forum and are Banned) test done due to some mysterious rashes and my fibromyalgia. The test came back with several intolerances and I am working on getting these out of my diet. The test did say I am highly intolerant of gluten, although the only time I have gastric symptoms is if I overindulge in bread (my vice!). Iím also intolerant of rice, potatoes, millet, fava beans and 99% of all the other things they make my beloved bread out of. The only premade bread I can find that meets the list is a corn based bread made by Gluntio, and I havenít been able to find a loaf to taste yet, lol.

Is there a forum here or elsewhere that I can pick brains about some of my other intolerances? Like white and sweet potatoes are on my list. Ok so avoid potatoes, but what about something that has potato starch in it? (pre shredded cheese by the way) Maple sugar is also on the list, how does that correlate to maple flavoring in bacon? (seriously, mama needs at least one of her favorite things!)

Thanks in advance.
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#2 ravenwoodglass

 
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Posted 23 August 2012 - 02:18 PM

Welcome to the board. Have you been tested for celiac? It would be a good idea to do so before you go gluten free. Many celiacs seem to react to a lot of foods before they have healed. There are times when the immune system is basically in hyperdrive because of the undiagnosed celiac which can make us sensitive to a lot of stuff we won't be sensitive once we have healed.
You may also want to check out the 'Other intolerances and Leaky Gut' section of the board.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 jcstepmom28

 
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Posted 27 August 2012 - 09:27 AM

No I haven't been tested for celiac. I honestly h.a.t.e. doctors and distrust most of them. The only reason that I consented to this test is because I knew my insurance would help pay for it and because I was having random rashes and was fairly desperate for a solution.

I've been eating gluten-free for a week, except for falling off the bus Saturday with some mini cupcakes, feeling a bit better and a bit worse. Even if I am not truly celiac I can see that this is a much healtier lifestyle than I was living (lean cusines, etc) so I am going to try to continue.

BTW never did figure out the rashes. Closest thing I could think of was that I was in allergy overdrive and then the dogs happened to pick up some fleas and it sent my body over the edge.
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#4 GottaSki

 
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Posted 27 August 2012 - 10:45 AM

Welcome!

Was your rash itchy? Celiac Disease can cause Dermatitis Herpetiformis (DH) - a skin rash. I'm certainly no expert on DH, but there are many on this board. There is a section of the forum dedicated to DH issues, that may be of some help:

http://www.celiac.co...-herpetiformis/

You also might want to read the FAQs thread regarding Celiac Disesase - it sounds like you have many symptoms that could be Celiac Disease:

http://www.celiac.co...celiac-disease/

I know you mentioned you don't wish to be tested, but keep in mind that a full celiac blood panel before you go gluten free can indicate Celiac Disease - if you know you have Celiac Disease, you are more likely to remove gluten from your diet completely for life - which is the only treatment for Celiac. Low vitamin/mineral levels can also indicate Celiac - so if you do get blood work you may want to add Bs, D, K, Iron, Ferritin, Copper and Zinc to the full celiac panel.

If you choose not to be tested, remove ALL gluten for 3 to 6 months to monitor symptoms. Whole foods are the best to eat in the early days as many processed foods impede healing - especially since you already know of other intolerances.

Most Bacon is fine - you just need to check the ingredients or contact the manufacturer when in doubt - email or phone calls work great.

Good Luck to you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 Juliebove

 
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Posted 28 August 2012 - 12:23 AM

My daughter and I have food intolerances. We avoid all forms of whatever the intolerance is. So if it were potatoes I would avoid potato starch. We make most of our food from scratch.
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#6 GFinDC

 
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Posted 28 August 2012 - 07:29 AM

I avoid potato starch. But it all depends on how our body reacts. If it makes you sick, don't eat it. That doesn't always mean forever though. Often people can start eating things later, say 6 months afterwards and be ok. But everyone is different and some foods may not ever work for you. It takes personal experimentation on these things. An elimination diet is the usual way to identify problem foods.

Staying away from processed foods is the best way to get things figured out. Limiting the number of different foods you eat cuts down the number of suspects.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 jcstepmom28

 
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Posted 28 August 2012 - 09:16 AM

Thanks for the warm welcome. The rash was very itchy, all over my body but had no bumps, streaks, etc. In other words, I was itchy with no visible rash. The only marks were from where i had scratched too much. Took 3 rounds of steriods and taking allegra twice a day for me to get rid of it.
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#8 jcstepmom28

 
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Posted 28 August 2012 - 09:18 AM

Oh and i don't seem to have gastric symptoms. I know there are a few things that bother me (like greek dolmas) but I have eaten them anyway because they are so tasty, lol.
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#9 GottaSki

 
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Posted 28 August 2012 - 12:58 PM

Thanks for the warm welcome. The rash was very itchy, all over my body but had no bumps, streaks, etc. In other words, I was itchy with no visible rash. The only marks were from where i had scratched too much. Took 3 rounds of steriods and taking allegra twice a day for me to get rid of it.

I had a rash like that for several months before I was dx'd and went gluten free. The meds really never cleared it completely, docs didn't think it was DH because I didn't have sores. I can tell you that it went away completely and has not been back since I've been gluten free. I can also tell you that while removing gluten resolved my rash and most digestive symptoms, my fibromyalgia symptoms remained until I had removed other intolerances.

Celiac Disease can be very hard to diagnose when you don't have "classic" symptoms - I'm not saying you have it, but with all the food intolerances you do have I would not rule it out. Sometimes gluten damages your intestines which then become more intolerant of different foods - once the gut is healed you can tolerate many of the items you were intolerant of. BUT if you have Celiac Disease you can never have gluten - that is the best reason to be tested. If you are having an autoimmune reaction to gluten, the damage can be very serious down the road.

So if you haven't already removed gluten, I'd get a full celiac blood panel. If you have already removed gluten - make sure you have removed ALL sources of gluten for 6 months to monitor symptoms.

As for other food intolerances - remove them completely (that means all forms of the foods you are intolerant of) for at least six months than challenge them again. Once removed for the long period of time you will likely have a much quicker reaction to foods you are intolerant of - that's been my experience.

It is possible to be intolerant of foods you are not testing positive for -- if I've remembered your list correctly you may be having a problem with foods from a few different groups of foods. There are several groups of foods that can bother different folks: Grains, Dairy, Legumes or Nightshades (potato (except sweet potato/yams), tomato, peppers (all except black pepper corns), eggplant) are the most common.

Hope this isn't too much info - food intolerances are tough to get to the bottom of.

Good Luck to you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 jcstepmom28

 
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Posted 30 August 2012 - 08:46 AM

Lisa you have made me feel tons better just knowing that someone else had the itchies like me!

Other than 2 slips I have been gluten-free for 10 days now, 1 was intentional and yesterday was just plain unavoidable. I was out of town, hungry and needed food fast. I will say that burger and fries did not taste as good as I remembered, lol.

The list of foods and additives is so long that I made myself a spreadsheet so I can get to it on my smartphone. I don't mind sharing it so if anyone knows of a good sub, I'd love to hear it. Only the green level things are ok, and there were only 200 foods tested. https://docs.google....BTbG1Mdnc#gid=0

BTW, I am itchy today probably from the fast food I ate yesterday.
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#11 GottaSki

 
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Posted 30 August 2012 - 10:45 AM

Keep at it - removing ALL gluten is tough, but once you learn how it does become much easier. Think whole foods - meat, vegies, fruit and rice - avoiding processed foods is best- and if you find yourself at the fast food counter again - at least ditch the bun and get the hamburger wrapped in lettuce - Carl's Jr and In and Out are great for that. I've had better luck at In and Out, but many on this forum have no problems at Carl's Jr.

I found epsom salt/baking soda baths helped on the itchy days :)

Hang in there!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 jcstepmom28

 
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Posted 30 August 2012 - 01:28 PM

I thought about that, but romaine and iceberg are on my do not eat list, along with Rice!!!

I'm not paying today for that bun and fries, thankfully. But that doesn't mean that I'm giving up. :lol:
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