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Our test results.... updated #12, #21, #146

post #1 of 426
Thread Starter 
Ok, I'm finally starting a thread to keep all these test results together so I don't get confused. I will update the OP as I get new results. Please feel free to give me your thoughts.

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RAST, SPT, ELISA


First, here's a visual of all RAST, SPT, and ELISA tests done in the last 2 years. (Let me know if you can't open this; I don't use Google docs very often.) As you can see, fruit is not our friend. Grains are not our friend. Nuts, seeds, and legumes are pretty much not our friends. Ok never mind... we have positives in every category. The only foods that have never tested positive in any test are:
  • turkey (failed a couple trials)
  • buckwheat (ate for a year and a half, now gives her loose/bloody stools)
  • some fish (I will be trialing halibut and tuna in the near future)
  • canola (using), cottonseed (um...no thank you), mustard
  • navy bean, wax bean (we're trialing beans & lentils right now- not sure if they're passing or not)
  • veggies- artichoke, asparagus, avocado, beet, cucumber, green pepper (failed trial), lettuce, mushroom, olive, onion, spinach, string bean (failed trial), zucchini (we eat most of these veggies at least occasionally)
  • fruits- banana (just reintroduced, not sure if it's passing or not), pineapple (possible ana reaction last year), plum (immediate hives around mouth during last trial)
  • and then a bunch of misc. spices and stuff
So... if these were your results, what foods would you be attempting to add to your diet? We are currently eating: lamb, potato, zucchini, broccoli, carrot, cabbage, chard, kale, canola oil, sea salt, honey, raisins, chocolate, occasionally blueberries. (and the occasional other veggies like onion, asparagus, etc.) After multiple negatives (on RAST, SPT, and ELISA) for egg, I finally reintroduced with minimal symptoms... and then got a huge positive on the SPT this week... so those are out again.


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Should be getting our celiac gene test, OAT, and comprehensive stool tests back in the next week or so.

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Celiac results- post #12

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OAT results- post #21

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Stool test results- post #146
post #2 of 426
Jess, can you set the access to the spreadsheet to be public or something? Tells me I don't have permission to access.

I think the big question for me is how you go about healing her leaky gut - I'm guessing it must leak or she wouldn't develop reactions to practically everything you eat??

I know that one thing I read on sugars and starches is that they are digested in the intestines, by enzymes on the walls of the intestines. If the gut gets inflamed, it often grows a big thick layer of mucous, which blocks access to the starch and sugar digesting enzymes. So then you'd get partially digested sugars and starches leaking out of the gut, instead of well digested simple sugars that probably wouldn't cause issues even if they did leak out.

This was DS' situation back when we got started (for him it was low zinc that started the cascade, I think). It took about two months of digestive enzymes, and taking out anything that wasn't well digested (pureeing seemed to help with a lot of stuff), and supping zinc, and kefir (both for digestion and probiotics) - and then we suddenly started getting sugars and starches back quite quickly. I'm guessing his gut was able to shed the mucous layer (some parents in ASD circles actually see the mucous getting shed, big mucous poops).

I don't know if there's anything in there that you aren't already doing/have previously tried, but it's the thing that occurred to me as I looked at your list.

As for what I'd try for food... Something well pureed - like make a hummus with well soaked and cooked navy beans, canola oil, salt? Taken with vitamin C to try to stimulate stomach acid?
post #3 of 426
Thread Starter 
Ack- I was afraid of that. I changed a setting and updated the link... let me know if it still doesn't work.
post #4 of 426
At first glance, I'd include the following.

Fish- grouper, Halibut, orange roughy, snapper, sole for the protein source. Maybe a fish broth.

*Beets for the folate, manganese, potassium, tryptophan. Beets increase two antioxidant enzymes in the liver, glutathione peroxidase and glutathione-S-transferase, and betaine which provides antiflammatory benefits
Avocados for the fats, vit K, potassium, folate, B6, vit C, phytonutrients
Asparagus for the vit K, huge folate benefits, vit C, vit A, tryptophan, B1, promotes Bifidobacteria and Lactobacill growth in the gut.

Cucumbers for the vit C, molybdenum, vit A, silica
Romaine lettuce for the vit K, A, C, folate, manganese
**Spinach for the vit K, A, manganse, folate, magnesium, iron, C, B2, B6, tryptophan, calcium, potassium, vit E
Olive oil for the fats

Water kefir
Bananas for B6, vit C, potassium
Pineapple for manganese, vit C, B1, anti-inflammatory and digestive benefit, antioxidants

Basil for vit K and phytochemicals, protects against bacterial growth, anti-inflammatory, protects epithelial cells, anti-oxidant


GINGER-
Quote:
ginger has a long tradition of being very effective in alleviating symptoms of gastrointestinal distress. In herbal medicine, ginger is regarded as an excellent carminative (a substance which promotes the elimination of intestinal gas) and intestinal spasmolytic (a substance which relaxes and soothes the intestinal tract). Modern scientific research has revealed that ginger possesses numerous therapeutic properties including antioxidant effects, an ability to inhibit the formation of inflammatory compounds, and direct anti-inflammatory effects.
http://www.whfoods.com/genpage.php?t...dspice&dbid=72

Turmeric- powerful natural anti-inflammatory. mucosal ulceration, thickening of the intestinal wall, and the infiltration of inflammatory cells are reduced

Carrots- vit A, K, C, potassium, antioxidant, many trace elements, Falcarinol in carrots promotes colon health
Apples- many phytonutrients and antioxidant benefits
Cranberries - antibacterial and antiviral benefits

Sea vegetables -broadest range of minerals of any food, especially phytonutrients, fucans, which can reduce the body's inflammatory response, iodine, vit K, folate and B12.

And the Lentils, of course.

Shitake Mushroom- They fortify the immune system by increasing T Cell functions. They assist in the production of antibodies and rejuvenate phagocytes.

Are you juicing greens? This is the easiest way to increase the quantity. We drink 16 ounces of fresh juice and get many enzymes and phytonutrients along with the vits/minerals. It is easy to drink that each morning.

Did I remember tomatoes were ok?

Have you considered black seed oil (nigella sativa)?
Quote:
Studies have also shown that Nigella sativa oil has anti-inflammatory property by inhibiting cyclooxygenase and lipoxygenase (18). An in vitro study demonstrated that nigellone, a constituent of the crude extract of Nigella sativa seeds, inhibited histamine release from rat peritoneal mast cells (10) and may reduce allergy symptoms in humans (12)
Also, for traditional Chinese health benefits: Daikon Radish leaves.





Pat
post #5 of 426
Thread Starter 
A juicer is on my wish list... maybe with our tax refund we can get one.

Pineapple and sea veggies were violent reactions, so those are out. Almost everything else on your list we eat occasionally. Tomatoes were a fail. Apples were a fail. She doesn't like avocado, won't touch it (which makes me think it's bad for her, because she LOVES trying new foods.) Haven't done mushrooms, because I can't stand them... but will try some. My kefir grains are dead (I don't know what I did... I dried them all, and they're just turning sour when I try to bring them back. I've tried 3 times now. Thinking about just starting back on kombucha again instead.) Haven't used many spices, but can try to incorporate those you mentioned. Haven't tried the black seed oil.... will see if I can find any locally.
post #6 of 426
I can send you some of your water kefir grains back.

I might give dd a bit of kombucha, but I'm not sure I'd add that to the mix.

The black seed oil is about $7 for 8oz, locally. That is about 16 tablespoons. If you did 1-2 tablespoons a day, that could help, imo.

How much sea vegetables were consumed? Too much could add a lot of iodine all at once, perhaps.

Can you hide a bit of pureed avocado in anything? Same with the mushrooms, maybe add them to broth.


Pat
post #7 of 426
Thread Starter 
She only had a couple bites of nori before she started getting blotchy.

I definitely will not hide food, because I want DD to know what she's eating. If her body says no, I want to respect that. So far, she's had pretty good intuition of what is/isn't good for her.

Yeah, I don't think I'll give DD more than an occasional sip of the kombucha- that's more for me. I do have lots of kefir grains left... I might give it another shot in a while.
post #8 of 426
I have a bunch of black seeds, I can send you some if you want to try them.

Lots of sea veggies are cross contaminated with shellfish - maybe that's the reaction?

And I'm with you on not hiding foods. Dd's got an amazing food intuition that I don't want to mess with - I've been working on developing my own food intuition for this entire journey.
post #9 of 426
Thread Starter 
Quote:
Originally Posted by whoMe View Post
I have a bunch of black seeds, I can send you some if you want to try them.

Lots of sea veggies are cross contaminated with shellfish - maybe that's the reaction?

And I'm with you on not hiding foods. Dd's got an amazing food intuition that I don't want to mess with - I've been working on developing my own food intuition for this entire journey.
That would be cool if you have some to spare. You have my address, right? Do you grind them up?

Yeah- it could be the shellfish issue for sure.
post #10 of 426
Quote:
Originally Posted by changingseasons View Post
That would be cool if you have some to spare. You have my address, right? Do you grind them up?

Yeah- it could be the shellfish issue for sure.
I knew there was a reason I hadn't mailed that check yet I tried grinding them, but prefer them whole - they're less flavorfull that way, so easier to eat more, and they're pretty chewable, I wasn't worried about them just getting swallowed whole.
post #11 of 426
I'm totally useless atm, but will sub and lurk in case I should become useful at a later date.
post #12 of 426
Thread Starter 
Ok... celiac gene test results are back! And it looks like no celiac for us!! But of course my brain has totally shut down after all the last test results (and I'm getting sick too... obviously, I don't deal well with stress ), so I need more eyes to verify what they're telling me.

Here are the results:
HLA-DQB1 Molecular analysis, Allele 1: 0301

HLA-DQB1 Molecular analysis, Allele 2: 0604

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

With this info following:
Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.



eta: So without those 2 main celiac genes, that means that she *can't* develop celiac, right?
post #13 of 426
I don't think you can have celiac without the gene. But are they saying that they test for celiac and gluten sensitivity as separate things? And that there's a gene for gluten sensitivity that's not celiac, and that's what she has? It's not the most straightforward test I've seen...
post #14 of 426
Thread Starter 
Quote:
Originally Posted by kjbrown92 View Post
I don't think you can have celiac without the gene. But are they saying that they test for celiac and gluten sensitivity as separate things? And that there's a gene for gluten sensitivity that's not celiac, and that's what she has? It's not the most straightforward test I've seen...
Yeah- that's how I'm reading it. But multiple genes, not just one. Here's more info (that my brain can't process) from their website:
Quote:
Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?
Gene tests for gluten sensitivity, and other immune reactions are HLA (human leukocyte antigen), specifically HLA-DQ, and even more specifically, HLA-DQB1. The nomenclature for reporting HLA gene results has evolved over the last two decades as technology has advanced. Even though the latest technology (and the one we employ at EnteroLab for gene testing) involves sophisticated molecular analysis of the DNA itself, the commonly used terminology for these genes in the celiac literature (lay and medical) reflects past, less specific, blood cell-based (serologic) antigenic methodology. Thus, we report this older "serologic" type (represented by the numbers 1-4, e.g., DQ1, DQ2, DQ3, or DQ4), in addition to the integeric subtypes of these oldest integeric types (DQ5 or DQ6 as subtypes of DQ1; and DQ7, DQ8, and DQ9 as subtypes of DQ3). The molecular nomenclature employs 4 or more integers accounting together for a molecular allele indicated by the formula 0yxx, where y is 2 for DQ2, 3 for any subtype of DQ3, 4 for DQ4, 5 for DQ5, or 6 for DQ6. The x's (which commonly are indicated by 2 more numbers but can be subtyped further with more sophisticated DNA employed methods) are other numbers indicating the more specific sub-subtypes of DQ2, DQ3 (beyond 7, 8, and 9), DQ4, DQ5, and DQ6. It should be noted that although the older serologic nomenclature is less specific in the sense of defining fewer different types, in some ways it is the best expression of these genes because it is the protein structure on the cells (as determined by the serologic typing) that determines the gene's biologic action such that genes with the same serologic type function biologically almost identically. Thus, HLA-DQ3 subtype 8 (one of the main celiac genes) acts almost identically in the body as HLA-DQ3 subtype 7, 9, or other DQ3 sub-subtypes. Having said all this, it should be reiterated that gluten sensitivity underlies the development of celiac sprue. In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3). However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive. My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).
post #15 of 426
That's what it sounds like to me - definite lifelong gluten sensitivity, but not celiac (and *shouldn't* develop celiac).
post #16 of 426
Quote:
Originally Posted by mamafish9 View Post
That's what it sounds like to me - definite lifelong gluten sensitivity, but not celiac (and *shouldn't* develop celiac).
So you have A reaction to gluten, but it's not necessarily affecting the villi, which is THE reaction for celiacs. But either way, you have to avoid gluten completely, so what really is the difference?
post #17 of 426
Thread Starter 
Quote:
Originally Posted by kjbrown92 View Post
So you have A reaction to gluten, but it's not necessarily affecting the villi, which is THE reaction for celiacs. But either way, you have to avoid gluten completely, so what really is the difference?
Well, the difference for me is that I don't have to replace all my kitchen utensils, cutting boards, etc. and tell DP that he can't have bread in the house anymore. Obviously, we're still not going to be eating gluten, but I don't have to worry so obsessively about contact reactions with it.

And... it means that celiac is not the reason that her intestines are getting shredded (bloody poo) every time she has a reaction, so I have to keep looking for answers there.
post #18 of 426
I had to write that one down to sort it all out... Basically, there's ONE gene that says you can always tolerate gluten. And the rest say you might be gluten intolerant. Something like 95% of celiacs have at least one of those two celiac genes, but only a small portion of people with those genes actually develop celiac. And only a portion of the people with 'just' gluten sensitivity genes develop gluten sensitivity.

So your results say, chances are your gluten sensitivity is not celiac disease, but it doesn't really say much about the severity of the sensitivity.

If the something damaging her intestines is a food, then it could just as easily be trace wheat/gluten as anything else...
post #19 of 426
Thread Starter 
Quote:
Originally Posted by whoMe View Post
If the something damaging her intestines is a food, then it could just as easily be trace wheat/gluten as anything else...
Possibly... but I'm more inclined to believe it's something that she's actually consuming (in quantity), considering that she tested positive for every single food that we eat.
post #20 of 426
Quote:
Originally Posted by changingseasons View Post
Possibly... but I'm more inclined to believe it's something that she's actually consuming (in quantity), considering that she tested positive for every single food that we eat.
And I'm inclined to trust your intuition more than my theoretical ramblings
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