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Very Frustrated


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38 replies to this topic

#16 domesticactivist

 
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Posted 29 May 2011 - 09:39 PM

My son kept getting glutened and I had an awful time going gluten-free until we
  • deep cleaned our kitchen
  • replaced or reseasoned old pots and pans
  • got rid of old appliances/mixers/etc
  • got rid of wood and plastic that we had before being gluten-free
  • stopped eating anything we didn't prepare in our own kitchen
  • Started the GAPS Diet

I've posted our story on my website, which you can find from my profile, and have some blog posts about GAPS there, too that you can find through the tag cloud or search. The GAPS diet is similar to what others here have suggested. It relies entirely on organic, free-range, pastured, minimally processed foods. It also eliminates all grains, introduces home fermented foods, and dramatically reduces sugar intake and sources. The diet aims at restoring the flora in your gut to a healthy balance, and to heal the damage done in the past.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

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#17 Coolclimates

 
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Posted 30 May 2011 - 03:16 PM

thanks for all of your suggestions. Can you tell me what a "full nutrient panel" is? I was checked for a whole bunch of food allergies from an alternative clinic. And it showed that I had lots of food allergies. However, the lab that processes those results has an "F" rating on the internet by many professionals. Also, that clinic was very questionable. They kept trying to sell me all kinds of supplements without telling me what was in them. And they did some other really bizarre tests, so I am not buying into those results as being accurate.
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#18 mushroom

 
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Posted 30 May 2011 - 03:38 PM

I am talking about testing for various vitamins and minerals that celiacs are often deficient in - Vitamins A, E, D, K, B12, folate, magnesium, zinc, calcium, etc., also ferritin/iron. You also should have your thryoid tested if it has not already been done, and if your D is low you should have a bone density scan for osteoporosis.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#19 dilettantesteph

 
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Posted 31 May 2011 - 03:58 AM

I was checked for a whole bunch of food allergies from an alternative clinic. And it showed that I had lots of food allergies. However, the lab that processes those results has an "F" rating on the internet by many professionals. Also, that clinic was very questionable. They kept trying to sell me all kinds of supplements without telling me what was in them. And they did some other really bizarre tests, so I am not buying into those results as being accurate.

I totally think you did the right thing there. I have reacted to supplements. I believe they commonly have low level cc and do more harm than good for super sensitives.

How do you find lab ratings?
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#20 domesticactivist

 
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Posted 31 May 2011 - 09:16 AM

I'm really wary of anyone hawking supplements. Studies have shown that many of the supplements on the market don't even contain what they say they contain, because the labeling laws are not as strict or as enforced as on plain old food.

We have started supplementing three things, with good effects:
Fermented Cod Liver Oil (the fermentation is important) from Green Pastures
ConcenTrace Trace Mineral Drops from liquimins/TraceMinerals Research
GUTpro organic probiotic supplement powder - gluten-free, dairy-free, soy-free, maltodextrin-free, the filler is cellulose(we don't give it to the kids, starting with too much made us feel sick) We also eat lots of home-fermented foods.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#21 padma

 
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Posted 31 May 2011 - 07:29 PM

Have you gotten a copy of your records to see what the numbers were? The guidelines for what is considered hypothyroid changed in 2002, however many drs are still not aware of the changes. See here: http://thyroid.about.../a/labs2003.htm
I have also read that some people can get diagnosed with hypothyroid if their tests consistly show a change toward hypo but may still be just under the level considered normal. So get ALL of the test records if you can from every time you had it done so you can see if there is a trend you can point out to your dr. That and your symptoms may be enough to get them to prescribe a low level of TSH hormone.

Also, which thyroid tests they doing? If they are only testing TSH (which is the most common one they run), they may miss something. Make sure they do a full panel testing T3 and T4. This article: http://thyroid.about...tedfriedman.htm explains a little more (although note the ranges are outdated) about why you could have a normal TSH but still have hashimoto's or a case of hypothyroidism.



You have gotten a lot of good ideas here. To test thyroid, you need Free T3 and Free T4. Those numbers are what is actually available to you to use.
When I was first diagnosed I was very malnourished. My nails had ridges, my skin was not smooth all the time and my hair was brittle. I took good quality supplements and I simply couldn't absorb them. All the literature said "just quit eating gluten and you'll be fine", but that wasn't enough for me. I had a stool analysis done and the bacteria and fungi counts were way off, which is typical of people like us. I tried some drugs to balance it and that didn't work. Eventually I hit on a program that worked: I took acidophilus at night (TheraLac is my favorite, and there are other good brands) and Xango juice 3 times a day. The juice has mangosteen peel in it which is anti-bacterial and anti-fungal. It is also anti-inflammatory, which I think was one of the key things I needed.
Someone else mentioned fasting. I did the same. I used the juice along with organic apple juice and organic vegetable juice, rotated them one each hour. Within 3 days my gut starts feeling good again. If I stay on it for a week, it seems to be even better. About day 4 I add a hard boiled egg (if not allergic to eggs) if I start to get hungry. The system I was trained in is from Germany. It keeps your blood sugar levels normal, keeps you from going into ketosis, and is pretty alkalizing. Part of system is to chew everything for 50 bites. Can you imagine? It retrains our chewing so food is digested much better. When I come off the diet I only add one food at a time. It is soooo clear what I react to then.
Another thing I found over those years is that I had retro viruses. There are reliable tests for them now. Any one of the viruses can make you tired. I had 3 of them back when. I didn't tolerate the meds, so took anti-viral herbs. It worked. It enabled my immune system to fight whatever was there. I got a fever for a few days and in about 4 days I felt better.
When our gut is so far off balance we are susceptible to lots of things. Fortunately, there are good tests available now. You usually have to go to a holistic MD or ND to get the tests.
Hope you figure this out soon and get your energy back.
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#22 Coolclimates

 
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Posted 02 June 2011 - 07:54 PM

I have gotten checked for thyroid problems many times, but am not sure which tests.
I have also gotten checked for various vitamins and minerals awhile back. It turned out that I was very low in Vitamin A and Zinc. I took those for awhile and got retested. The tests showed that I had gotten back to normal levels and my doc told me to stop taking those. I've also suffered off and on from anemia in the past but the last test I had showed that my iron level is good. Now that was a few months ago, so things might have changed.
In addition to having little energy, my acne has gotten worse. I also am experiencing pretty frequent lower back pain as well as brain fog.
Yes, that clinic that was trying to sell me all these suppliments has a bad reputation around here. They also wouldn't share my test results unless I came in for another extremely expensive appointment and another whole set of most certainly bogus tests. I managed to get my test results from through the University of Chicago Celiac Center (that alternative clinic has to give them those results by law). So that's how I found out about my various "allergies." I also found out that I had "candida overgrowth." Thoughts on candida overgrowth? Before I was diagnosed with celiac disease, I suffered from chronic yeast infections, some lasting months and not responding to any medications. I heard the whole "candida overgrowth" theory is very controversial.
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#23 mushroom

 
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Posted 02 June 2011 - 08:26 PM

I have also gotten checked for various vitamins and minerals awhile back. It turned out that I was very low in Vitamin A and Zinc. I took those for awhile and got retested. The tests showed that I had gotten back to normal levels and my doc told me to stop taking those. I've also suffered off and on from anemia in the past but the last test I had showed that my iron level is good. Now that was a few months ago, so things might have changed.,,,,,
I also found out that I had "candida overgrowth." Thoughts on candida overgrowth? Before I was diagnosed with celiac disease, I suffered from chronic yeast infections, some lasting months and not responding to any medications. I heard the whole "candida overgrowth" theory is very controversial.


Just because, with supplementation, you got your levels back to normal, does not mean that your body is able to keep them at normal. I still supplement with B12 injections, and prescription D, and take MaxiMins and lots of other stuff because even though I have been gluten free for 3-1/2 years my body is still not able to make enough. I think a retest might be in order.

As for candida, I had it in the gut and it was absolutely no fun. (Don't know if you are talking about vaginal or otherwise. ) Could not digest anything. Of course, I had c. diff at the same time, but candida in the gut can be measured by a stool sample. Any naturopath can get that done for you, or maybe you have a sufficiently enlightened doc who can order a stool testing for you. That is the most reliable way of testing. It certainly sounds like you need to do SOMETHING. At this point if you are sure you are gluten free I would probably recommend a naturopath.

Looking back over your posts, it would seem that if you are being cc'd it is most likely coming from your parents' house, so check that one more time, especially with your mom.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#24 Coolclimates

 
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Posted 03 June 2011 - 06:18 AM

When I mentioned yeast infections, I meant the female kind. I've had them on and off since I was 13. Real drag. Since going on the gluten-free diet, I haven't had one. Yet. Hoping those will be a thing of the past.
I have no idea whether I have candida in my gut or not. Like I said, I don't have any stomach or gi issues. the only exception is acid reflux (GERD), which has gotten much better since going on the gluten-free diet.
I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?
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#25 love2travel

 
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Posted 03 June 2011 - 06:29 AM

When I mentioned yeast infections, I meant the female kind. I've had them on and off since I was 13. Real drag. Since going on the gluten-free diet, I haven't had one. Yet. Hoping those will be a thing of the past.
I have no idea whether I have candida in my gut or not. Like I said, I don't have any stomach or gi issues. the only exception is acid reflux (GERD), which has gotten much better since going on the gluten-free diet.
I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?



I, too, have had severe chronic and often debilitating lower back pain for 3 1/2 years. I thought much of it was due to a back injury (herniated discs and so on) but recently was diagnosed with fibromyalgia which can certainly be related to celiac disease. That is why my back pain does not heal. The specialist used this analogy. If my husband, for example, were to stub his toe it would smart for several minutes. If I were to do the same, it would cause pain for several weeks! Perhaps something worth looking into.

I do not have GI issues with gluten either, thankfully.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#26 GlutenFreeManna

 
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Posted 03 June 2011 - 08:25 AM

I'm also wondering if there is a reason I'm having a lot of back (particularly lower) pain? I'm wondering if it is a symptom of Celiac or just something entirely not related?


This may be reaching, but have you had your kidney function tested? It is possible to have a kidney infection or low functioning kidney's without havign any major symptoms besides lower back pain and fatigue.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#27 dilettantesteph

 
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Posted 03 June 2011 - 05:40 PM

My lower back pain seems to be gluten related. That doesn't mean that yours is though.
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#28 Coolclimates

 
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Posted 03 June 2011 - 06:10 PM

On another subject, is it possible that I could be getting glutened from my dish soap? I use Meijer's brand (green apple scent) and am unsure as to whether it has gluten in it or not. Or should I worry about this at all?
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#29 domesticactivist

 
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Posted 03 June 2011 - 11:01 PM

Anecdotally, my partner's chronic lower back pain went away gluten-free/on GAPS. She's not celiac as far as we know. (not tested)
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#30 dilettantesteph

 
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Posted 04 June 2011 - 03:49 AM

Gluten in dish soap is a possibility.
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