When to test?

[Ren]

I've been on budesonide three times this year, with maybe 12 weeks off in between. I was on it last year june/july/aug, when first diagnosed with l.c.

I'm currently at 3mg every other day (wk 6 of every other day). Prior to this, 3mg every day for two months, 6mg for two weeks, and 9mg for two weeks. So I've been on it this time for four months and one week.

Is it safe to do the Enterolab test now? I have not been totally gluten or dairy free. I don't have an iga deficiency.

I'm going to do the aip four week elimination meal plan, is it best to taper on budesonide for a couple more months and stay in the elimination phase of the plan? Then off of budesonide for a few weeks while still in elimination to make sure I'm stable, then reintroduce foods if I'm okay?

Being on 3mg every other day I've identified a couple triggers that cause D-alcohol and beer. I'm gluten intolerant on gene testing I did through Ancestry and 23 and Me, but showed negative for the celiac gene testing and blood tests that the gi doc tested. Otherwise, sometimes I have gut rumbling, nose is runny sometimes, tired, but I don't know what caused it. So, if I can't do Enterolab now, I don't know how much value I'll have in determining sensitivities in an elimination or reintroduction phase, if I'm still on budesonide? I don't want to come off budesonide too soon this time though and have to go back on or deal with d 25x a day again. Maybe just keep tapering to every third day?

When I was diagnosed, I was told diet doesn't matter, budesonide will take care of sibo, leaky gut, etc... Having read most of the m.c. book, and reading on this forum, I clearly know differently. My regular and g.i. doctor have no understanding of this condition. My prior functional doc. wants to do more tests not covered by insurance, and a million supplements, and tells me for diet to eat whole foods and stay away from "whites"-bread, rice, potatoes, etc. That's the same one that put me on antibiotics two times for non positive lyme and coinfections, l.c. at 25x a day for nine months after that. The most restrictive diet would not slow it down during that time.

So, any help as to an approach would be tremendously appreciated, I'm not sure what to do and I'm feeling extremely stuck and overwhelmed.

Thanks :)

[tex]

Here are my thoughts:

Alcohol causes leaky gut, and beer contains gluten. (from the barley malt)

Yes, you should be able to get accurate results from EnteroLab tests that you order now. As to whether or not to continue tapering budesonide, that's a difficult question. If you're not totally gluten free and in remission, you're probably going to relapse at some point. But nothing is chiseled in stone, so who knows? You might be OK.

Properly done, the aip should heal your intestines in a month or so, so if it works, whether or not to take the budesonide will be a moot point. I have no experience with that diet. Hopefully someone who has, will offer their thoughts.

Tex

[Ren]

Thanks for your quick reply Tex! I was able to order the Enterolab test quickly and have my results. I'm grateful they are much more mild than I had anticipated, probably due to restrictive diets for years, with the exception of the past year. I'm not sure what to make of the high fecal fat? I had that back in 2016 on a test as well. I was a heavy drinker for years too :(


My results are:
Quantitative Microscopic Fecal Fat Score 993 Units
Fecal Anti-gliadin IgA 14 Units
Fecal Anti-casein (cow’s milk) IgA 10 Units
Fecal Anti-ovalbumin (chicken egg) IgA 17 Units
Fecal Anti-soy IgA 11 Units

Mean Value 11 Antigenic Foods 12 Units (Normal Range is less than 10 Units)
*Food to which there was no significant immunological reactivity:
Oat
Rice
Cashew
White potato
*Food to which there was some immunological reactivity (1+):
Tuna
Beef
Chicken
Pork
Walnut
*Food to which there was moderate immunological reactivity (2+):
Corn
Almond
*Food to which there was significant and/or the most immunological reactivity (3+):
None

Please help with questions if possible:
*Am I safe to rotate the meats every four days? When is it safe to have a particular meat, 2-3 or more days in a row?

*I believe shrimp is okay, but stay away from fish because of the tuna, or okay to rotate tuna and other fish? I don't have a shellfish allergy.

*Are the soy, casein, and eggs permanent sensitivities? If not, what is a safe time frame to wait before re-introducing?

Thanks for all of your help :)

[tex]

*Am I safe to rotate the meats every four days? When is it safe to have a particular meat, 2-3 or more days in a row?

Rotating them should be OK. Keep a food/reaction diary so that you can recognize any reaction patterns in case one or more of them causes problems after a while. Two or three days in a row might be risky, while you're still in recovery. After you've been in remission for a while, that would be more likely to work OK.

*I believe shrimp is okay, but stay away from fish because of the tuna, or okay to rotate tuna and other fish? I don't have a shellfish allergy.

I would wait until I was in remission before I started experimenting with fish or any other foods. Shellfish should be safe, however.

*Are the soy, casein, and eggs permanent sensitivities? If not, what is a safe time frame to wait before re-introducing?

Soy and casein sensitivities are virtually always permanent. Many of us are able to eat chicken eggs in baked products after we're in remission, but otherwise, chicken eggs usually remain a problem. Many (not all) of us are able to tolerate duck eggs, or the eggs of some other species (turkey, goose, pheasant,quail, etc.)

The high fecal fat score is probably due to reacting for many years, but it may be restricting your nutrient absorption. You probably need to be taking active forms of the "B" vitamins, and normal forms of D, and C (If you've been reacting for over 5 years). Wait until you're in remission before taking vitamin C, though, because almost all of us react to ascorbic acid before we're in remission.

I hope this helps.

Tex

[Ren]

Thanks for your help! I'm trying to get stable with food and vitamins. Little steps to get there feeling overwhelmed and tired, but at least this time I have a proper diagnosis and a true resource, thank you for that!

I've definitely had a range of vitamin and mineral deficiencies since 2013 (when D became the norm), which ranges vary drastically at different times. I've stopped supplements except for d3, zinc, and magnesium. The majority of the supplements I was taking, while primarily "allergen free", I now realize, have had corn in them. I wonder if that is where my corn sensitivity came from, maybe even soy. I don't eat corn or soy.

I still need to find out what ingredients are in two scripts, I didn't get a lot of detail in my initial search. Hydroxyzine and ferrous sulfate.
*What is the best way to find that out?

I continuously supplement with d3 and zinc, or they will drop back down.
--My recent d3 level is at 99, I've been taking 10,000iu/daily since March. My current brand, healthy origins, has the following ingredients:
Vitamin D3 (from Lanolin as Cholecalciferol), Pure Cold-Pressed Olive Oil, Gelatin, Glycerin, Water.
The gelatin is bovine, no source listed for the glycerin, could it be corn? I'm a plus 2 on corn, but my overall score is 12...additional states:
Does Not Contain: Sugar, Yeast, Gluten, Soy, Barley, Fish, Shellfish, Peanuts, Egg or Milk. No Preservatives, Artificial Colors, or Artificial Flavors.
*Do you think this is safe? Should I go down to their 5000 cap daily, or alt the 10000 every couple days to maintain? I'm having a hard time finding a supplement without corn.

--my zinc level is 80 (60-130), that's with me supplementing again since March. My gnc brand has zinc gluconate and cellulose as ingredients, but does state "sodium, wheat, gluten, soy, corn, dairy, yeast, additive, preservative free".
*I'm afraid to quit supplementing on this one since it usually goes low?

Magnesium RBC- my level is 4.4 (4-6). I was taking magnesium citrate but just quit. I just ordered a bottle of magnesium spray and think one bottle will provide 800mg per day/month. I've had anxiety, fibromyalgia, tmj, cfs, etc. for years.
*should I do more than 800mg/day of magnesium?

Folate (no current test), and b12 (520 level with standard being above 180), have never been low, but I am mthfr 1298 homozygous and I read that levels may not reflect accurately necessarily. I went gluten free years ago, only past year I had some gluten, GF again now. So I don't think my level is super skewed by folic acid. I have a hard time still with their supplementation. Methylated in my multi with more folate than b12, I tolerated well. Methyl B12 on it's own or in any combo with folate, where folate amt. Is greater than the b12 amt., doesn't work well. I over methylated at times, got irritated, anxiety, etc.. Sometimes I have to take niacin to flush. I've stopped the multi for now.

I am homozygous for several methylation gene mutations. One of which is comt. Sam(e) helped for anxiety and my jaw and neck pain. Since stopping over a month ago (in order to limit supplements), my anxiety, depression, ocd, has crept back in. I took a sam(e) the other day and felt much better. I can't find a sam(e) supplement without corn.
*Is magnesium playing a larger role in this, and maybe I'll get some relief there?

Please help with anything you can. Thanks for your time.

[Ren]

I meant to say on the last post that if I take methylated folate and b12 together, and b12 is in a greater amt than the folate, I over methylate. In the multi I took, the methylfolate was greater than b12 and i seemed fine. I did get the multi from seeking health, dr lynch, and there were other ingredients in there as well that may have been supporting.

[tex]

I still need to find out what ingredients are in two scripts, I didn't get a lot of detail in my initial search. Hydroxyzine and ferrous sulfate.
*What is the best way to find that out?

You should be able to find virtually anything with an Internet search, provided you use the right keywords.

I'm having a hard time finding a supplement without corn.

That's because virtually all products use the cheapest source for additives, and that's typically going to be either soy or corn.

--my zinc level is 80 (60-130), that's with me supplementing again since March. My gnc brand has zinc gluconate and cellulose as ingredients, but does state "sodium, wheat, gluten, soy, corn, dairy, yeast, additive, preservative free".
*I'm afraid to quit supplementing on this one since it usually goes low?

When we supplement zinc, we eventually run the risk of our zinc/copper ratio getting out of balance. That ratio needs to be maintained at about 15:1, ideally. If you're going to supplement zinc for relatively long periods, it's better to take a balanced supplement, such as the one at the link below. This one contains citric acid, but such a small amount shouldn't be a problem.

https://www.iherb.com/pr/Solaray-Zinc-C ... lsrc=aw.ds

*should I do more than 800mg/day of magnesium?

That's a heck of a lot of magnesium (if you're referring to oral magnesium). There's a limit to how much magnesium we can absorb in a few hours. The rest is wasted and the kidneys have to dispose of it. Always divide up the dose throughout the day. Be sure your kidneys are working well or this much magnesium can overload them, and lead to kidney function problems. For reference, I take 300 mg of magnesium per day, divided between meals. But I'm not suggesting that amount is right for anyone else, because we all have different needs.

Folate (no current test), and b12 (520 level with standard being above 180), have never been low, but I am mthfr 1298 homozygous and I read that levels may not reflect accurately necessarily. I went gluten free years ago, only past year I had some gluten, GF again now. So I don't think my level is super skewed by folic acid. I have a hard time still with their supplementation. Methylated in my multi with more folate than b12, I tolerated well. Methyl B12 on it's own or in any combo with folate, where folate amt. Is greater than the b12 amt., doesn't work well. I over methylated at times, got irritated, anxiety, etc.. Sometimes I have to take niacin to flush. I've stopped the multi for now.

There's a lot we don't know about methylation issues, so we have to use caution.

I am homozygous for several methylation gene mutations. One of which is comt. Sam(e) helped for anxiety and my jaw and neck pain. Since stopping over a month ago (in order to limit supplements), my anxiety, depression, ocd, has crept back in. I took a sam(e) the other day and felt much better. I can't find a sam(e) supplement without corn.
*Is magnesium playing a larger role in this, and maybe I'll get some relief there?

Magnesium is involved in over 300 chemical processes in the body, so yes, it plays a big role in how well many of these conversions proceed.

And please remember, I'm not a doctor, so these are strictly my unprofessional opinions.

Tex

[Ren]

Thanks for your response Tex, and the important cautions re. supplements! I just want to know what m.c. people have found helpful, and am not taking anything as medical advice. I don't feel that a single one of my doctors currently, understands m.c., and I'm tired of even the best intentions, and being on my own to figure things out.

I'm going to try to do 400mg of the magnesium, using the topical magnesium oil, seems to be going well since starting this week.

I'm not going to take zinc for now.

Both my scripts are loaded with corn. One, I have to keep taking, ferrous sulfate for anemia. The pharmacy was not very helpful :(
*I'm finding controversy over corn derivatives being acceptable? I don't eat corn or soy and I have a sensitivity, I'm sure it is from the mass amount of supplements I have taken, incl. Derivatives :(
*I know that people with a corn allergy will have their scripts compounded, is this necessary with a sensitivity?

My vitamin D is high at 99, so I'm going to take the 10,000iu I already have, but only 1-2x a week. Added ingredient gelatin is from bovine, I'm trying to find out where the glycerin is derived from still, obviously I suspect corn.
*do you know of a vitamin d that does not have corn in it? I'm still looking...
*with a "1" sensitivity on beef, and a "2" sensitivity on corn, do you think taking 1-2 of my current vit d pills/week is okay?
*I just don't think that taking the ferrous sulfate every other day and the vit d 1-2x a week can be good with a "2" sensitivity on corn?

[tex]

*I know that people with a corn allergy will have their scripts compounded, is this necessary with a sensitivity?

With gluten it would, but with corn, maybe not. It depends on the severity of your corn sensitivity and the total amount of corn you're getting each day. For example, if the corn is a fraction of a percent in each medication, it may not be a problem. But if it's a relatively high (as in 10–20 %), it's much more likely to be a problem

My vitamin D is high at 99, so I'm going to take the 10,000iu I already have, but only 1-2x a week.

Yes, that should be fine.

Added ingredient gelatin is from bovine, I'm trying to find out where the glycerin is derived from still, obviously I suspect corn.

Glucerin can be made from either animal or plant sources. If it's plant, it's probably more likely to be made from soy

*do you know of a vitamin d that does not have corn in it? I'm still looking...

I believe that Doctor's Best Vegan D3 is made with olive oil, but it also has glycerine and Bovine-derived gelatin listed on the label.

*with a "1" sensitivity on beef, and a "2" sensitivity on corn, do you think taking 1-2 of my current vit d pills/week is okay?

Probably, because that's at least a 3-day rotation.

*I just don't think that taking the ferrous sulfate every other day and the vit d 1-2x a week can be good with a "2" sensitivity on corn?

If you're taking the ferrous sulfate for anemia, try blackstrap molasses, it's usually a better source of iron. The iron is more absorbable, and it's much easier on the tummy. Ferrous sulfate often causes digestive upset for many of us. Brandy, for example, had much better luck with blackstrap molasses a few years ago. Cooking with a cast iron skillet is probably better than taking ferrous sulfate.

[Ren]

Thanks! I love the idea of blackstrap molasses, and using a cast iron skillet.

*How long should I rotate "1" foods?
*How long should I avoid "2" foods?
*Is a corn sensitivity temporary for most people?
*Are fermented foods beneficial or harmful?

My fecal fat score is 993. I've emailed my doc on this but have not heard back. She had mentioned doing a ct scan after my colonoscopy on Jan 18th.
*Is this usually indicative of bile, stomach acid, and/or pancreas issues? Or not necessarily and it can sort itself out with diet?
I've tried betaine hcl and enzymes and got d and cramps. Cholestyramine did not work. With my sensitivity scores being lower, I just wonder if this area is holding me back.

This started overnight in 2002 after I quit smoking and took endless antibiotics for sinus infections. My fingers and joints ached and increased in size. I've had fluctuating joint pain, fibro, chronic fatigue for years. The d started in 2013. The joint pain has been horrible than normal since august when I ate some gluten, more dairy than usual, and histamine I think from die off (nystatin then fermented foods).
*what is the main cause, or is it a combo of sensitivities, histamine, etc?

[Ren]

Since avoiding sensitivities (still working on corn in supplements), my gut noises and pain have subsided, I've had none. That includes still using some homemade sauerkraut, coconut milk keifer, and kombucha.

My bm has been 1x a day without drastic variations in the type.

I'm still on budesonide every three days.

I have fatigue, joint pain, and I believe possible histamine from die off, so I've backed down on the fermented foods. It causes horrible ocd, anxiety, and depression periodically too.

[tex]

*How long should I rotate "1" foods?

Hard to say — we're all different. Probably at least 6 months after you reach remission. It takes at least 3 to 5 years for the gut to completely heal, for adults. Kids can usually heal in less than a year.

*How long should I avoid "2" foods?

Usually longer.

*Is a corn sensitivity temporary for most people?

It was temporary for me, but it's probably not, for everyone.

*Are fermented foods beneficial or harmful?

The problem with fermented foods is that they have a high histamine content. I used to eat a lot of them, but I became histamine-sensitive. Now, they're my worst problem, after gluten.

My fecal fat score is 993. I've emailed my doc on this but have not heard back. She had mentioned doing a ct scan after my colonoscopy on Jan 18th.
*Is this usually indicative of bile, stomach acid, and/or pancreas issues? Or not necessarily and it can sort itself out with diet?
I've tried betaine hcl and enzymes and got d and cramps. Cholestyramine did not work. With my sensitivity scores being lower, I just wonder if this area is holding me back.

Fat isn't digested by normal digestive processes, so the problem can have many causes. For MC patients, the usual problem is inflammation (which spreads to the pancreas), but it sounds as though your inflammation is subsiding now. Your fecal fat score might be going down, as a result of the reduced inflammation. That score depends on having a "normal" amount of fat in your diet. If you have way more fat in your diet than what's considered "normal" (on the day that you collect your stool sample), your score can be artificially high. I would retest, and take note of how much fat was in my diet during the 24 hours leading up to the sample collection. For MC patients, the elevated fecal score usually returns to normal as the digestive system heals.

This started overnight in 2002 after I quit smoking and took endless antibiotics for sinus infections. My fingers and joints ached and increased in size. I've had fluctuating joint pain, fibro, chronic fatigue for years. The d started in 2013. The joint pain has been horrible than normal since august when I ate some gluten, more dairy than usual, and histamine I think from die off (nystatin then fermented foods).
*what is the main cause, or is it a combo of sensitivities, histamine, etc?

If you're asking about the joint pain, that's almost always due to leaky gut (which is due to inflammation). Leaky gut allows partially-digested peptides into the blood stream, and then deposits them into various joints and organs. It should fade away as you reach remission

Since avoiding sensitivities (still working on corn in supplements), my gut noises and pain have subsided, I've had none. That includes still using some homemade sauerkraut, coconut milk keifer, and kombucha.

My bm has been 1x a day without drastic variations in the type.

I'm still on budesonide every three days.

I have fatigue, joint pain, and I believe possible histamine from die off, so I've backed down on the fermented foods. It causes horrible ocd, anxiety, and depression periodically too.

It sounds as though you're getting close to remission, if you can get the histamine issues under control. Fatigue and brain fog are usually the last symptoms to resolve. For most of us, that takes about 2 years after we reach remission for them to completely disappear.

Tex

[Ren]

Thanks again for your responses! I did a colonoscopy and upper endoscopy two weeks ago, due to anemia my doctor wanted to look for bleeding, I hadn't been aware of any. I ended up having angiodysplastic lesions, which the doc was surprised because I'm only 49. No finding this time of lymphocytic colitis either! This lab doesn't tryptase stain, but I can have slides sent out at my own expense, is what I was told. I've been off of the budesonide for about ten days, and still eating restrictively. I did a ct scan a week ago and elastase test to check the pancreas due to the high fecal fat on enterolab. The ct scan came back fine, still waiting on the elastase test.

I know the joints and some of the cognitive things will take time, I just don't know if I have a histamine/mast cell issue to address. Tiredness, depression, periods of anxiety, lack of motivation, rosacea, seborrheic dermatitis, i.c., etc, are ongoing.
**Are these going to improve over time as I heal, or are they possibly going to stick around because of a histamine issue? I'm so confused. I don't know what is caused from what.

I found a mast cell specialist close by. They want my doctor's referral, appt. notes, and tryptase test results, in order to determine if they'll see me. I'll have to get together other doctor's notes, since I haven't been seeing this doc very long. She is very kind and knowledgeable, but she is still a typical Western doc. So, I'm feeling very overwhelmed with a feeling of no where to turn. She is, however, trying to get my insurance to approve my prescription ingredients so I can get the iron pills, hydroxyzine and cetirizine compounded, in order to avoid corn + others. I'm doing the molasses right now, thanks for the info. on that! The sugar is a lot, I don't usually do any sugar except bananas, so whoa it hits me lol.

I'm eating my same basic foods and rotating the meats as they are a plus one.
**I figure I need to maintain eating my current foods longer for a while, since I'm off budesonide to be sure I'm good, and if no reactions, can I assume these current foods are still good?
**Then introduce one new food at a time? I've been gf 2 months now, and avoiding other sensitivities for 1.5 months.

I'm still eating my own homemade fermented foods in moderation (sauerkraut, coconut milk kefir, kombucha), no "reactions" I'm aware of, just blah feeling from the long initial die off toxin release. I think the die off in itself is histamine producing, so I may have higher levels right now. Even my safe foods are a little higher in histamine I think: banana, shrimp (in meat rotation), avocado sometimes, coffee w/coconut oil and ghee, 85% organic chocolate, chicken or turkey bone broth. Other foods I eat are oatmeal with rice protein powder, rotating meats (no fish), rice or white potato sometimes, sweet potato, brocolli/cauliflower/carrots/brussel sprouts, water, and I make my own coconut milk. I don't "notice" any changes when I eat any of these foods.
**Am I just thinking I'm okay but really need to try a low or no histamine food diet to know? Confused.
There are so many benefits to fermented foods, I don't want to give them up if possible.

I recently noticed that a moderate amount of the inflammation in my hands has lifted, I'm still stiff, sore and have fibro but it just seems better. I have had a better appetite and have packed on a bunch of weight, but I was so anorexic in appetite and appearance, there was room to gain. Hopefully this is good. My sleep seems to be getting a little better too. The depression and anxiety are a little better, but still pretty bad :(

I haven't worked in ten years from dealing with this illness, didn't even get a l.c. diagnosis until 2019. I divorced my husband of 24yrs due to the stress and his lack of support. I'm trying not to freak out, but I need to stabilize and get to work. I need energy and to be able to think! I'm feeling so overwhelmed with the histamine issue, and questioning if I'm doing the right things, what to do next... I know everyone is different and healing takes time. I appreciate any help.

[tex]

If you're not itching, you probably don't have a histamine issue. Most of the problems you named should fade away as you continue to heal.

I'm amazed that you can get away with eating oatmeal. Most of us are sensitive to the avenin in oatmeal.

Tex

[Ren]

Thanks for the response Tex :) I don't know about the oatmeal either. I have eaten very little oatmeal, potatoes and rice since 2014, when I got D and started eating more keto. I only recently added them back in, I had no sensitivity to any of them on Enterolab. I eat organic gf non gmo steel cut oats, but i don't think that would really matter.