Months of weight loss

[Chrisdat]

Hi, I just found this forum earlier this week. So happy and thankful for you all. I've read hundreds of your messages.
I was diagnosed with LC 2 weeks ago after losing 35+ lbs. in just the last few months. I am still losing 2-3 lbs. a week and hope it stops soon. I was put on Delzicol, and so far (only a week) no help. Actually the last two days have I've been severely dehydrated and having diarrhea 10+ times a day, more than my normal amount.
I tried SCD (Specific Carbohydrate Diet) and a low-FODMAPS diet, then a diet low in "fermentation potential" (from Fast Track Digestion book), and now am excited to hear more about low-histamine. Each diet was progressively better, SCD stopped the extreme explosive diarrhea that kept me at home 24/7, low-FODMAPS is something I never figured out as I can't really easily tell what foods are worse than others. The best was Fast Track Digestion, in that it expanded the variety of foods from SCD, but left out some of the problematic foods like honey (for me - bad, fructose, and diary.
Low-histamine rings very true to me, as mucous in my throat and nose and sneezing around 20 or so times in a row was something I never related to food. It's going to take some effort for me to get comfortable with the which foods I can and cannot have. I started Clariton yesterday, and hope to see if that makes a difference.
Lots for me to learn. But I wanted to say Hi - and thanks for your forum. BTW, I have Tex's book arriving on tomorrow from Amazon. Can't wait to dig in.

[Heady]

Welcome Chris
You have come to the right place. Sorry you are suffering. I have faith in the many wonderful folks here that they can stear you in the right direction toward healing. I have followed their advice sticking to my diet and now have had 3days D free. I received my book in the mail today & can't wait to immerse myself in my new read. My gosh I feel soooo wonderful. There is a wealth of experience on this forum and they all genuinely care for each other. Each person has their own individual MC Journey. Best wishes , may you find balance in your quest for health.

[tex]

Hi Chris,

Welcome to our internet family. We're happy to see you joining us, but sorry that you needed to join us.

If you're taking Claritin, I hope that you're using the Redi-Tabs, because the regular version of Claritin contains a dairy-based ingredient, and some of us react to even the trace amounts found in pharmaceuticals and supplements.

It does sound as though you might be having mast cell/histamine problems, and they can certainly affect digestive system behavior. If you haven't already read the short articles at the links below, you might find the general background information that they contain about mast cells, and how they relate to MC, to be helpful:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Yes, the lifestyle changes that most of us have to make, in order to get our life back from this disease, definitely require time, dedication, and sacrifice, but the effort is certainly worth it, because the alternative is not much fun, to say the least. Again, welcome aboard, and please feel free to ask anything.

Tex

[Leah]

Welcome Chris. I see that you are very proactive. That will help you tremendously in the long run.

I think once you read Tex's book, you will get a better understanding about the foods we are most likely reactive to and the histamine connection. I didn't tackle the histamine thing until after I had already been on a strict elimination diet and Entocort for 6months. When I was down to one BM a day, I was still wondering why that one BM wasn't solid. So, I took an antihistamine and the next day…Solid! The same with the next and the next. I couldn't believe it. Now, I take an Allegra each morning and a Benadryl each night. If I am going to a party or I know I will be drinking wine, I will also take an H-2 antihistamine, but try not to do that too often.

All the "diets" can get confusing, but the basics are: The top four protein offenders for us are ( in order) GLUTEN, DAIRY, SOY, AND EGGS. SOME OF US CAN'T EAT NUTS EITHER. I can though. Then there are the foods that are too hard on an inflamed gut and should be avoided until you feel better. They are : Beans and legumes, RAW fruits and vegetables, acid foods like citrus and tomato sauces, spicy foods, sugar, sugar substitutes, maybe caffeine, chocolate. and maybe night shades. These foods can be tested back in one at a time down the road.

We are all different in what we can and can not eat beyond the basics, but most of us start out with a very basic diet of meats, fish, white rice, very cooked veggies ( squash and carrots are a good place to start), and homemade broth soups. Try to only use olive oil and coconut oil. Since we are all different, I have to say that I kept eating eggs and I also ate olives, avocado, corn tortillas, a little apple sauce, rice cakes with almond butter, Chex cereal with almond milk, and herbal tea. Some of us had to give grains up completely and other can't eat ALL MEATS. If you want to know for sure and have the money, the test they run at Enterolab will give you some answers ( google them). Just make sure you are not IgA deficient before taking the test ( simple blood test).

Good luck and please keep us posted on your progress. Try to remember this is a process with it's ups and downs, but if you stick with it, you can figure it out.

Leah

[Chrisdat]

Leah, Tex and Heady,

Thanks for the warm welcome. Yes, I am sad to be here. But not being alone is a huge comfort. Knowing many if you have walked many miles with MC, before me, is reassuring.

Food sensitivities are driving me crazy. Yes, these foods are a no go for me, and the list is growing: Gluten, diary, soy, nuts, vegetable oils, chicken, I think turkey, eggs (whites for sure, I can have a washed yolk soft cooked in broth), nightshades, all fruits, raw veggies, cooked winter greens, legumes, sugar, sugar subs, and the hardest of them all, no chocolate! I really miss chocolate. But I get violently ill, even vomit.

I will look into IGa test. Can I do without a Dr.?

Thanks for tips on Claritan. I think it has slowed things down slightly. I take at night and only 2 D's instead of my usual 3-4 at night. Less dehydration.

Lots of questions, particularly mast cells and histamine. Thanks for links. I'll wait till I read Tex's book, and then ask questions remaining. Thanks again, I feel more positive than I have in months.

[MaggieRedwings]

Welcome Chris!

Sorry to see you have to be here but believe me, you can get your life back and the wealth of knowledge here and in Tex's book is a good path to healing. Diet is essential to most of us and you rival me in the cannot eat department. After gut healing you should be able to get some of the foods back into your diet but the healing does take time.

Glad to see you are proactive and look forward to hearing from you again.

From an old timer, Maggie

[tex]

I will look into IGa test. Can I do without a Dr.?

Most members here just ask their PCP to order a test to rule out Selective IgA Deficiency. I'm not sure if there are any independent labs that will do that test (at a patient's request).

Based on your symptoms (many, many food sensitivities, plus becoming violently ill from chocolate), you may need a higher dose of antihistamines, or another brand. Many members here take a Claritin Redi-Tab or an Allegra tablet in the morning, and Benedryl at night, in order to get better control. Since Benedryl causes drowsiness, it's best taken at night.

Tex

[MarthaE]

All this information is so very helpful! Thank you much Tex and family. I will ask my GP for a selective IgA deficiency test tomorrow and possibly test for thyroid calcium and Vit D levels too. I just started taking a liquid iron supplement and it seems to have slowed things down a bit and I am so very grateful for that!!! I miss my salads and everything else but I know I must be patient, i now eat baby food and bone broth and coconut manna like its DElicious. Hope to feel more like myself soon. Still on the entocort and don't want to get off too soon and reFLARE. Big Hugs and thank you for the amazing forum. Will definitely be ordering a few copies of the book soon. Tired and wired, m

[Martha]

Dear Chris,



This forum is a wonderful place for support and encouragement.

Martha

[MarthaE]

Welcome Chris :) I'm a newbie, glad you found this forum

[Chrisdat]

Thanks all. Today I got my IGa test done. Should know tomorrow. Called my PCP, she called my GI, he said he didn't think food sensitivities had anything to do with LC. True, it didn't cause my LC, but right now I can hardly eat anything. So it seems best to know what to avoid while I heal, right? Testing through elimination is iffy, since it is 3 days each food, and even then, is it just a bad couple of days or the food? Hoping the lab testing can speed things up. PCP says lab food testing is not always reliable? Any comments?

Lastly, GI and PCP agreed dehydration is too much and added Endicort 9 MG. To see if it would help. Hoping!!

Kept me on Delzicol for awhile while Endicort takes hold. Delzicol seems to be having no effect, so not sure about this strategy.

Trying Clariton during day and Benedryl at night. I hate adding all these variables at one time, but I'm desperate for a change. Would love to have a week without losing weight and so dehydrated.

[tex]

PCP says lab food testing is not always reliable? Any comments?

Yes, while what your PCP says is generally true for some of the labs out there, that definitely does not apply to EnteroLab. Obviously your PCP is not familiar with the lab, or she wouldn't have made that remark.

This link will take you to an old thread written last year, where someone else asked for opinions on EnteroLab:

Is Enterolab testing worth the price?

And here are some of my thoughts about the lab, copied from an old post written almost 4 years ago:

Regarding the questions about Enterolab: I hear you - the internet is indeed full of scams, and the shady record of many such labs, in the past, is the main reason why most GI doctors are slow to embrace the technology used by Enterolab, (they've been stung before, and such memories tend to linger forever).

Enterolab was founded by Dr. Kenneth Fine, roughly 10 years ago. Dr. Fine has MC himself, which is the reason why he started researching the disease, in the first place. He is the person who discovered the link between diet and MC, and he is the creator of the "Pepto-Bismol" treatment, (he developed it over 10 years ago, but many GI docs are just now beginning to recognize it as a possible treatment for MC).

Enterolab is a fully accredited lab, and since it is located in Dallas, Texas, you can check his professional reputation online, at the Texas Board of Medical Examiners. The last time I looked, he had zero negative entries on his record. His tests are patented, all over the world, and no other labs are licensed to use his technology, so that's why you don't see anyone else offering stool tests for food intoleraces, that actually work - he holds all the patents.

The downfall of most labs is their poor repeatability record, because individual technicians judge the results differently, so they report different results. Only one individual does all the testing at Enterolab, and he holds a PhD, so their tests are absolutely repeatable, reliable, and accurate. For example, Dr. Fine's stool tests can detect gluten sensitivity several years before the disease becomes severe enough to raise the antibody level in the blood to a level where the classic celiac blood tests can detect the disease. IOW, the stool tests are several orders of magnitude more sensitive than the blood tests.

If you will read some of the celiac discussion boards, you will discover that Enterolab has accumulated thousands upon thousands of satisfied customers over the years that they have been in business. There is no way that they could have done that if they were not totally legitimate. I'm not suggesting that there are absolutely no unhappy customers out there, but I haven't come across a single one, so far, and I've scanned a heck of a lot of internet discussion boards related to this topic.

IMO, they're the only game in town, if you want to test for food sensitivities. There are other labs offering so-called food sensitivity tests, but none of them come close to the standard of accuracy and reliability maintained by Enterolab.

And no, I'm not on their payroll, nor am I affiliated with them in any way, other than the fact that I am a very satisfied customer. Just for the record, I have only ordered 3 food sensitivity tests from them, (egg, yeast, and soy). All three results were negative, and sure enough, I do not react to those foods. At the time that I ordered the tests, though, I wasn't sure, so this saved me a lot of misery and aggravation, since I didn't have to wonder if I was sensitive to them, and I didn't have to worry about keeping them out of my diet.

Yep, Enterolab gets an unequivocal thumbs up from me.

Tex

Since that old post was written, I've ordered a couple of other tests from EnteroLab, because after years of remission, I had some suspicious symptoms creeping back into my life. Just as I suspected, the test results confirmed that I was producing antibodies to gluten (my diet obviously had become cross-contaminated with trace amounts of gluten), and I was also producing antibodies to casein (I can tolerate dairy products just fine, without any noticeable GI symptoms, but something was causing a bit of osteoarthritis in a couple of fingers, because the distal joints were growing crooked, and I suspected casein). Sure enough, after eliminating the cross-contamination, and cutting out casein, the problems were resolved.

As far as medical tests that will help you control your MC go, you'll get more bang for your buck from EnteroLab, than any other tests that I'm aware of.

Tex