Food Sensitivity Tests. Valid or Not?

[pokey449]

I was diagnosed with SIBO this past summer and went through 2 rounds of antibiotics and felt much better but it didn’t last despite being on a low FODMAP diet ever since. I’m bring evaluated for celiac now. Nothing conclusive yet. Still having sxs. In an effort to figure out what’s going with me my naturopath wants me to have tests for food sensitivities. Measuring IGE and IGG4 as I understand. In reading about these tests there seems to be the opinion they are not that helpful or valid. Some describe them as a waste of time & $$$. What’s the opinion in this forum about such tests. I don’t want to go down another expensive rabbit hole if it’s not going to be of any help. 

[knitty kitty]

I'd rather try a low histamine diet and the Autoimmune Paleo Diet.

Lots of people just starting out on their diagnostic journeys seem to have reactions to a wide variety of foods.   Mast cells "spit out" histamine at the slightest provocation in Mast Cell Activation Syndrome.

Many foods on the FodMap diet were intolerable to me because they were high histamine foods or foods that liberated histamine.  

After going on the AIP diet and eating only low histamine foods, I had great improvement in symptoms. 

I also started supplementing certain vitamins that the body uses to clear histamine and stop mast cells from degranulation.  Thiamine, B12, and Vitamin C along with Vitamin D all help to calm the immune system and help you heal.  

Antibiotics can deplete thiamine.  Thiamine is important in keeping bacteria from overgrowing into the small intestine.  Thiamine is easily lost due to diarrhea and competition with those SIBO bacteria.  Thiamine deficiency can begin in as little as nine days.  Chronic subclinical thiamine deficiency can contribute to ill health.  

I would skip the tests and invest in this book ....

https://www.thepaleomom.com/books/the-paleo-approach/

Hope this helps!

[pokey449]

Oh my, yet another possible piece to the puzzle. How does one ever sort all this out. There are many folks who eat whatever they want with no repercussions while those of us in this collective boat are wandering through a maze trying to figure out what’s making us feel so bad. It’s quite infuriating. But thanks for the info and the suggested info to review. I will give it a look see. 

[raspberryfirecracker]

I once had a naturopath tell me which foods to eat based on whether she could push my arm down while I was holding them.... 🤨 Just picture, me holding an apple in one hand, my other arm sticking out in the air like a kettle spout. Repeat with pear, yogurt, bread... I may have secretly been on a hidden camera prank show? 🤭 What I'm saying is at least yours is taking bloodwork, but do I think it's a waste of time? Yeah probably... 

Celiac is autoimmune, if you can't have milk because of casein (body can mistake it for gluten, or just plain react to it regardless) that's autoimmune, but food intolerances seem to change based upon how your overall health and gut are doing, and aren't permanent, so your results today might not even matter in a few months. You could heal so much that you don't have them anymore, or you could keep doing what you're doing (which you won't, or you wouldn't be on here) and develop even more of them. Think of it like, you wouldn't drink 3 cups of coffee when you have the flu. But you wouldn't blame the coffee, it was just, why on earth did you have coffee while you had the flu?! I.e. you wouldn't eat a bunch of histamine-heavy/mast cell triggering/gut irritating/oil-laden/chemically-processed/inflammatory foods while you're trying to stabilize. You get intolerant to them because one of their properties exacerbates something, it's not always an IGE allergy etc, so maybe that's why those tests are hit or miss.

I'm glad I read that bit about thiamine and antibiotics, having just started abx myself this week. I haven't gotten my checkup bloodwork back yet but think I'll take some extra anyway. Never once occurred to me to take extra vitamins with antibiotics!

It's completely possible to calm down your immune system and not end up with SIBO again, and I don't know of ANY quicker way to do it than the diet kitty mentioned. Especially if you're getting it because of celiac reasons. It addresses everything at once, including being completely celiac-compliant...! I like to sort all the foods into random groups per week, and see what I can come up with. Your body heals while you're busy googling what you can make with bok choy. 😂

I've been the person who couldn't even eat a potato, now I eat even what used to be my worst "food intolerance" (soy) without reacting, if I've been taking care to keep histamine low/mast cells calm/vitamins stable. It may seem like a maze but they're all very connected, it makes a lot of sense in the big picture. And there's definitely a light at the end of the tunnel. Buy that book! 🤓

[pokey449]

I will check out the book. But doesn’t the paleo diet contradict the low FODMAP diet that I’m currently on?? I’ve been attempting gluten free as well but recently learned I was not successful because I’ve been eating oatmeal that was not designated as “gluten free”. My docs are not 100% sure yet if I’m celiac. My primary symptom is nausea which they think is more likely due to acid reflux. I went off the PPI I was on for years and did well for 5 months only to have the acidity cone back and my GI doc put me on 40mg of famotidine at night but even that’s not killing the nausea. But then also I just had an epidural steroid shot for grinding low back pain that kept me awake 1/2 the night and I take 50mg of tramadol to help with that as well. They can cause nausea. So it’s hard to know what all is causing my nausea. I’m not having  bloating or cramping nor any diarrhea, just nausea and stomach pain which makes me wonder if I really have celiac. I have no skin issues either. Just saying it’s all very perplexing but I will definitely consider the book on paleo diet. 
thanks for your kind input. I really appreciate it. 😁 

pokey 

[Scott Adams]

I would disagree that food allergy/sensitivity tests are not worth doing. I am about to re-do food sensitivity testing myself because I know that there are things in my diet that I'm allergic to on some level, and I want to see how I feel if I eliminate them for a while. I'll be writing an article on my experience, but I've already mentioned several times here that long before I ever got diagnosed with celiac disease I scored very high on the old RAST allergy tests for tomatoes, wheat, peanuts, and sever other things. For a long time I took daily allergy shots for pollen and foods, which did work very well for me, but didn't solve all of my issues. My doctor at the time, who was a well-known board certified immunologist told me that because of the extremely high score I had with wheat, that I should not eat it daily, and only eat it once or twice a week at most. I didn't listen to him because, at the time, being a college student it seemed like an impossible task. 5-6 years later I ended up with full blown celiac disease, and still wonder what would have happened had I followed his orders? There is no way to tell now, but one thing is for sure--the tests they are doing now by labs like ALCAT are far superior to the RAST test I got back then.

[pokey449]

Thanks Scott. I will give the food sensitivity test more consideration and research. Unfortunately it’s $200 and Medicare won’t pay for it. My PCP is not nuts about it. He thinks it will invariably come back saying I’m sensitive to a lot of foods that are healthy and limit me even more than the low FODMAP diet I’m on. I’ve already lost 32 pounds and eating pretty much the same minor stuff all the time but I won’t close my mind about it. 

[raspberryfirecracker]

2 hours ago, pokey449 said:

I’ve been attempting gluten free as well but recently learned I was not successful because I’ve been eating oatmeal that was not designated as “gluten free”.

Your post reads like, "person accidentally glutening themselves with oatmeal wonders why they don't feel better" 🤣 Many of us can't eat oats at all. I can't, gluten-free certified or not.

Also that level of famotidine is intense; are you on a multivitamin and monitoring your b12/folate levels especially?

If FODMAP were your answer you wouldn't be continuing to get SIBO over and over again, losing weight, continuing to get malnourished. Your story is pretty typical of so many of us pre-dx, I know I've experienced very similar; it can be difficult to accept any disease. Good luck, stay open.

8 minutes ago, Scott Adams said:

8 minutes ago, Scott Adams said:

I am about to re-do food sensitivity testing myself because I know that there are things in my diet that I'm allergic to on some level, and I want to see how I feel if I eliminate them for a while.

 

I messed up that box, oops.

That makes a lot of sense Scott! I'm curious to read how others did, too, and what their doctors called food intolerance/how they handled it. Where I am, intolerance is a non-allergic response, and food allergy is food allergy, testing is done by immunologist. I've had a ton of intolerances, but no allergies whatsoever after 3 times testing. I can confirm my arm went down by holding 1 apple though... 🤦🏻😂

If anyone's asking whether food allergy testing is a good idea I will never disagree; seems "intolerance" testing can mean all sorts of things! 

[pokey449]

Raspberry firecracker you said food intolerance testing can mean all sorts of things. That’s my take on it thus far, that it doesn’t offer any clear definitive answers. Some argue it’s a waste of time and money. So I’m ambivalent about it to say the least. It’s being promoted by my naturopath and I will admit I have limited confidence in naturopathic medicine based on past experience. Though they do good things up to a point, I think it has its limits. As for the oatmeal I’ll give it up for a while to see if it makes a difference. Also, no I’m not getting SIBO over and over. My 2nd round of antibiotics knocked it out and I’ve not had any cramping, bloating or diarrhea since. My primary symptom is nausea and fatigue/malaise. My GI doc and PCP are of the opinion it’s acid reflux, to much acid??? I was on a PPI for 17 years due to bouts of esophagitis and stopped it via a longer taper when I got SIBO this summer and the acidity has come back with a vengeance. And there’s the question of celiac as I’ve been discussing here. It’s all very confusing and hard to sort out. 

[GFinDC]

Trents was on PPI's for many years.  He might have some input for you.  Ditching the oats is a good idea and may help.  Eliminating them for a couple months is the way to go.  FODMAPs are thought to be the cause of some cases of NCGS (non-celiac gluten sensitivity, or IBS.  That may be why they put you on the low FODMAP diet.

The top 8 food allergens are a good place to start eliminations.  In Europe they have longer lists of food allergens.

https://www.fsai.ie/legislation/food_legislation/food_information/14_allergens.html

.https://www.healthline.com/nutrition/common-food-allergies#TOC_TITLE_HDR_2

 

Edited February 5, 2021 by GFinDC

[pokey449]

2 hours ago, GFinDC said:

Trents was on PPI's for many years.  He might have some input for you.  Ditching the oats is a good idea and may help.  Eliminating them for a couple months is the way to go.  FODMAPs are thought to be the cause of some cases of NCGS (non-celiac gluten sensitivity, or IBS.  That may be why they put you on the low FODMAP diet.

The top 8 food allergens are a good place to start eliminations.  In Europe they have longer lists of food allergens.

https://www.fsai.ie/legislation/food_legislation/food_information/14_allergens.html

.https://www.healthline.com/nutrition/common-food-allergies#TOC_TITLE_HDR_2

 

I will consider that. But dang, I just bought a supply of certified gluten free oatmeal. I have to say though this is all very frustrating trying to figure out what’s what that bothering me, each of us as we are all different. Either way I really appreciate everyone’s advice and suggestions here and will take them all to heart. Wishing everyone good health. 

[Scott Adams]

6 hours ago, GFinDC said:

Trents was on PPI's for many years.  He might have some input for you.  Ditching the oats is a good idea and may help.  Eliminating them for a couple months is the way to go.  FODMAPs are thought to be the cause of some cases of NCGS (non-celiac gluten sensitivity, or IBS.  That may be why they put you on the low FODMAP diet.

The top 8 food allergens are a good place to start eliminations.  In Europe they have longer lists of food allergens.

https://www.fsai.ie/legislation/food_legislation/food_information/14_allergens.html

.https://www.healthline.com/nutrition/common-food-allergies#TOC_TITLE_HDR_2

 

Good point, @trents may want to chime in here as he does have experience with PPI's. Above all, be sure to discuss any changes, like cutting back or eliminating PPI's, with your doctor.

[knitty kitty]

Pokey,

I found an article or two....

This one explains the how PPI's can affect vitamin and mineral absorption..... I'm wondering if magnesium deficiency or B12 deficiency could be the cause of your ongoing nausea and fatigue.  

"Proton pump inhibitors and risk of vitamin and mineral deficiency: evidence and clinical implications"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110863/#!po=5.93220

The symptoms of magnesium deficiency are very similar to thiamine deficiency because thiamine needs magnesium to activate it.

"Magnesium. Fact Sheet for Health Professionals"

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/#h5

"Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness."

And...

"Missing the early signs of thiamine deficiency. A case associated with a liquid-only diet"

https://pubmed.ncbi.nlm.nih.gov/30092713/

 

And this article can explain why you are serionegative for Celiac....

"The impact of acid suppression medications and non-steroidal anti-inflammatory drugs on clinical and histologic features in celiac disease"

https://pubmed.ncbi.nlm.nih.gov/28462884/

Famotadine is an H2 blocker.  

I hope this helps you discern which direction to go on your journey.

 

[pokey449]

With approval from my GI doc I tapered off my PPI this past summer using a liquid compounded form of lansoprazole which allowed me to make small cuts over a 2 month period to get off and thus prevented acid rebound so common amongst those who try to get off PPIs by other means. The first 5 months I did fine, but then the increase in acid started coming back and increased my nausea. Had it day and night. Thus my GI doc put me on 40mg of famotidine which I have to say has helped with the nausea. As for any mineral deficiency I had my Mg checked a while back and it was fine. I take a multi-vitamin and extra B12 & D3 now as well as the occasional Mg citrate capsule for slowed BMs. I have to say I did not get the significance of the article on PPIs in relation to testing seronegative for celiac. I did not read it as PPIs cause you to test sero-negative, just that there was a correlation between the two in that study. Did I read it wrong or miss something? Again, I really appreciate everyone's help here. This is a great forum!!! 🐵

[Debbie Gail]

I have just joined this forum and can really relate to this posting.  For many years, years ago I was on PPIs and it definitely contributed to digestive issues for me because it resulted in low HCL.  I started taking HCL with meals last summer and it’s made a big difference for me.  Also when my HCL was very low, my B12 was low.  After taking HCL my B12 is better.  I can also relate to the histamine issue.  I noticed I was congested a lot at night and also had flushing.  I started a low histamine diet about 10 days ago and I see some improvement.  At the same time I am also trying to eliminate most things with lectins.  

[trents]

On 2/3/2021 at 9:05 AM, pokey449 said:

I was diagnosed with SIBO this past summer and went through 2 rounds of antibiotics and felt much better but it didn’t last despite being on a low FODMAP diet ever since. I’m bring evaluated for celiac now. Nothing conclusive yet. Still having sxs. In an effort to figure out what’s going with me my naturopath wants me to have tests for food sensitivities. Measuring IGE and IGG4 as I understand. In reading about these tests there seems to be the opinion they are not that helpful or valid. Some describe them as a waste of time & $$$. What’s the opinion in this forum about such tests. I don’t want to go down another expensive rabbit hole if it’s not going to be of any help. 

I've had allergy testing done both by the skin prick method and the blood analysis method. There was significant disagreement between the results of one versus the other but there was also some agreement.

From my own experience with this as well as what I have read, there are significant problems with allergy testing:

1. The antigens can be cross contaminated with other allergy producing substances.

2. There is variability in the analysis methods and standards used by the labs. The same sample, when sent to two different labs can yield significantly different results.

3. There often is poor correlation between what the tests show and what the person tested experiences in actual day to day living.

I would not say that allergy/sensitivity testing has no value but I would caution against considering the results as definitive. I would suggest having more than one method of testing done and then focus on those allergens that are strongly positive as identified by multiple test methods. And always compare the laboratory results with what you actually experience as you consume or (in the case of non food allergies), breathe or come in contact with.

Edited February 6, 2021 by trents

[pokey449]

Thanks Trents. I’m tending towards not doing the food sensitivity tests. Im of the mind they are not that accurate and definitive.