Celiac and MC vs. just MC

[jnmast]

Hello Everyone..
I trust this finds you regrouping after the holiday weekend-- and that the gatherings with friends/ family and meals was the right balance for you all. These issues that we deal with take creativity, patience and support and it is a gift when we can find others who might understand a bit of what all that means, especially during food-focused times of the year... it helps on the path to getting and staying 'well'.
I continue to be so grateful for this forum and the wisdom and community that I know is here.

I have been contemplating how my concurrent celiac diagnosis, along with the MC has affected my course of healing and wonder about others' thoughts/ experiences.
My practitioner, whom I was originally diagnosed by, and who has a relatively open mind about my dietary approach recently re-emphasized the difference(s) between celiac and MC--- and it made me aware that ongoing delicate balance of my overall health, stress, diet, etc. could be affected by the dual issues.
(more pain and sensitive with celiac and the s/s of water, urgent, uncontrolled diarrhea with MC).

I feel the MC has been held at bay-- no diarrhea, really no pain, etc., but I still am aware that veering from the GF, df, soy free and low fiber diet is crucial for continued, solid elimination and remaining energized and well overall. I really don't tolerate raw veg at all, only very minimal fruit and low-fat is a must.
(I am having trouble gaining any weight, despite no diarrhea for over a year-- 107 at 5'7")
What I am getting at is that it does not take much for me to be thrown off balance, diet-wise and I'm curious if those with celiac also notice these sensitivities.

I appreciate any insight or thoughts in advance!
Thank you!

[tex]

Hi Jacqueline,

Opinions may vary among members here, but in my opinion, celiac disease is irrelevant (a non-issue) for anyone who has MC. Why? Because our small intestine is inflamed anyway due to MC, so what difference could qualification for the formal definition of celiac disease possibly make?

I'm pretty sure that I'm a celiac (I have the HLA-DQ2 gene), but I never bothered to seek a formal diagnosis, because I don't see how that could make any difference in my diet, or lifestyle. I don't see any reason to go through the misery of a celiac challenge in order to get a formal diagnosis that only tells me that I react adversely to gluten. I already know that. Doctors don't seem to realize that MC makes us much more sensitive to gluten than celiacs (in my opinion).

Healing usually takes 3–5 years for adults. You should be beginning to heal sufficiently at this point to be able to begin gaining weight. Have you added up your calorie intake? It's impossible to gain weight unless you take in more calories than you burn each day. If you're active, and especially if you exercise a significant amount, your body will need more calories than the average individual in the general population, just to maintain your weight. And you'll need additional calories to gain any weight. IOW, you probably just need to eat more. Are you able to eat rice? Grain is very fattening.

Tex

[brandy]

Hi Jacqueline,

My Mom is celiac. I am not.

The main difference in what Mom and I eat is that I have to eat a much narrower scope of foods to stay in remission.

Mom with celiac can eat ice cream, cows milk, all dairy, and much more processed foods than I can eat. She
also does better with raw foods. She has to be GF only to stay in remission.

I have to eat a dramatically fewer scope of foods and unprocessed to stay in remission.

It also seems to be that I am more easily "thrown off balance" than Mom.

Both Mom and I get severe joint (knee) pain from eating gluten.

I probably would not read too much into your Doctor's comments. From hanging out with Mom
a celiac diagnosis seems to be a walk in the park compared to a MC diagnosis.

[brandy]

Hi Jacqueline,

Make your snacks into mini meals to get more calories.

Breakfast- Snack (mini meal) -Lunch-- Snack (mini meal) --Dinner

Also force yourself to eat a bit more even if you are not hungry (but not at dinner)--eating
too much at dinner causes me to flare.

Are you able to eat the avacodo oil chips or the olive oil chips?

Congrats on no D for a year. That is a huge achievement.

[jnmast]

Hi,
Thanks for the thoughts/ experience.. and for clarifying, these are really super-helping comments. When other people analyze weight and are super 'concerned' it is nice to share the 3-5 year fact. I feel decent energy-wise so am less worried.. always fun to navigate family members' outside perspectives and support ;)

It does seem to be that everyone on this forum is sharing similar stories and much different than the folks I meet who are only celiac, so all of this makes sense.
I definitely need to remain on my 'known ok' diet-- have entertained the Enterolab tests so should probably try that soon. Are their any recommended times for having these tests done? I have been off Entocort for over a year.
Though I really am vigilant about watching what foods cause what changes in s/s and avoiding additives, this additional info could be really helpful with other real foods/ nuts, grains, etc.

Regarding weight gain-I don't handle large meals that well so will increase my snack sizes, just feels really uncomfortable at times but I know it will pass.
I can do the chips, no canola or soy oil, but again, just not too much since high in fat.

I eat low-histamine, safe and wild seafood 6 times / week (small portions) but am considering adding chicken and maybe beef as those seem to be good options for many, so that would help with weight gain as well if I tolerated.

Thanks so much again for your time and consideration!

[tex]

After a year off of budesonide, the tests should be accurate. The EnteroLab test results will still show gluten antibodies (anti-gliadin antibiodies), since they will show antibodies to gluten for at least two years after gluten has been removed from the diet. But after avoiding other foods for a year, the tests may or may not show any antibodies to those foods, even if you are sensitive to them, because the antibldies should be out or your system by now.

The results will surely tell you whether or not chicken and/or beef are safe for you.

Tex

[dolson]

Jacqueline, I've had silent Celiac Disease since a baby. A bloated stomach in pictures and I was holding my stomach and crying as a wee tot. My clothes did not fit over my bloated stomach. It even thinned my hair. I have pictures as a six month old baby and I don't look healthy. I looked BLOATED! My whole body was bloated. Back in the day, you gave your kids milk, milk and more milk and that made me sick along with gluten. I dated a radiologist and he pointed out my bloated stomach. I thought he was making fun of my bloated stomach since he did not like overweight people. My girlfriend noted my bloated stomach and I thought she was making fun of me. We always fought over boyfriends.

No diarrhea, didn't understand why my stomach was bloated, so I went my merry way. I do remember the Brain Fog. I would take exams and I had to study harder than others since my brain would falter at times. I had no idea why.

I have no problem eliminating gluten. I am use to it. My main concern with Celiac Disease and Microscopic Colitis is HEALING and Gabes informed me to eat lots of protein for healing. I eat protein almost every meal. She is a true gem.

This is a wonderful site. I can't say how much I adore Tex and his monitors. They are beyond Wonderful.

Healing takes time since we are older and I am willing to do whatever to maintain the healing process. Your friend, Dorothy