gf diet and mc

[willabec]

i see alot of postings here about people following the gf diet....and that is great that it works for you....i guess my question/concern is that i have been gf for 9 years, just diagnosed with mc....so why would already being gf not help and not helping? am i to assume that i am now allergic/sensative to something else? man this is so darn frustrating!

[Linda in BC]

Yes, I think that would sum up many people's experience here, myself included. For me it was first Casein, then Gluten, then tapioca, then eggs and most recently coconut milk. And I know it must be very frustrating for you, having been GF for so long. But many who kept ferretting out their intolerances have eventually been able to reach remission of their MC and maintain it, some without meds of any kind.

Linda

[tex]

so why would already being gf not help and not helping?

That's a very good question, and I can't answer it, without knowing your answer to this question: What I'm wondering is, "did it help for 9 years, or did you still have any symptoms?"

am i to assume that i am now allergic/sensative to something else?

Unfortunately, that's almost certainly the case. Very, very, very few of us are sensitive to gluten, and nothing else, (I can think of only two, offhand). Typically, when MC is triggered, genes are simultaneously triggered that cause sensitivity to gluten and casein, and in about 50% of cases, sensitivity to soy, also. Some have additional sensitivities, of course.

Tex

[Gloria]

I went GF for about a month after I was DX'd and found this board. It didn't make the slightest difference in my symptoms, so I ordered the Enterolab tests and reluctantly went on Entocort. When I found out I had at least four additional intolerances, I realized why going GF didn't help me improve.

Gloria

[Gabes-Apg]

willabec wrote:
so why would already being gf not help and not helping?

That's a very good question, and I can't answer it, without knowing your answer to this question: What I'm wondering is, "did it help for 9 years, or did you still have any symptoms?"

IMO - quite a few people here had events or situations or medications that 'set off the fire hose D' after the chronic flare we are mega sensitive to our trigger foods. prior to that event we were eating those items now they are our enemies.

It could be that you are more senstive to Caesin or Yeast or some other ingredient like preservatives or high fibre food items, and it is those ingredients that are causing the issue now.

the interesting part of MC is that even though there is similaraties in our symptoms our triggers can be very very different... and what works for one may not work for another it is very very individual....

hope this helps

[Zizzle]

I've read here and in other places that casein sensitivity can mimic the damage caused by celiac disease in some poeple. I think you mentioned your doc said your villi had not healed yet, despite 9 yrs on the GF diet? I know they technically call this "refractory sprue" as if there is no known cause, but I think additional undiagnosed sensitivities probably play a part.

[tex]

Tex

[Deb]

Do ya'll think there is a relationship between the length of time you had untreated symptoms and the healing process. Do you think more intolerances develop the longer things go untreated? I'm a newbie to all this (diarrhea started in July, MC diagnosed in September, gluten free since Enterolab in September, pretty much symptom free now for 2-3 weeks). I'm wondering if maybe I'm having a bit easier time than many here because I was diagnosed quickly and through all your trials learned the best way to approach the MC. I'm keeping my fingers crossed that my main trigger is gluten though my casein test came back positive.

[tcorbett]

Willabec,
.
You are so much like me!!! I have been GF for 7 1/2 yrs - little relief - I had less D, but still have D, then it became more watery. i finally had an endoscopy, colonoscopy and camera endoscopy - they found lots of inflammation, and on the biopsy - found MC as well as my villi were still flat as if I was just diagnosed with Celiac and not on a GF diet. I found out that I needed to take out dairy - crying about that still, as well as nightshades - they can cause inflammation - yes, more tears. I even bought new pots and pans etc that have never been glutenized. Still no reprieve. Just this summer I was finally diagnosed with MC, but that GI(the top gun) said there wasn't anything to do, my local GI has me on Apriso and an anti-depressant. I have had mild depression over the past 20 yrs, since our guts are sensitive to our emotions - we are tackling both. I was tested 18months ago for food allergies and they found 25 - possibly due to the inflammation of my gut - leaky gut. I am on a very restrictive diet - things are looking up - slowly, but it's frustrating! I am currently grain-free - not sure how long I'll last at that. Sorry to go on and on - just wanted you to know - you are not alone!

If there is anything I can do - let me know! Take care! Theresa in ME

[willabec]

tex...i can't say if i had had this problem for 9 years...i doubt it and would that if i did i would have had it checked into sooner but for the past 1.5 years i have had some bowel issues and just got it checked out....i don't know if it's me not responding to the gf diet, the mc or a bunch of other things combined...the list can go on right? i am trying to stay positive, i really was hoping that taking the entocort would put things in check alot sooner rather than later....but i see i may have to wait a bit longer to see if it works....

[natythingycolbery]

Do ya'll think there is a relationship between the length of time you had untreated symptoms and the healing process. Do you think more intolerances develop the longer things go untreated?

I would say no, but i started with symptoms in June, was diagnosed August and have pretty much been in remission since i started medication for it (which I am now off). Yet the GI believes mine was drug induced and will get worse at some point most likley. so I wonder if it depends on how you contract it...

[tex]

Do ya'll think there is a relationship between the length of time you had untreated symptoms and the healing process. Do you think more intolerances develop the longer things go untreated?

We're all different, of course, but there does seem to be some correlation between accumulated damage, and healing time. Some of us who were untreated for a number of years, have required a long time to reach remission, (it took me a year and a half, but I didn't use any meds, and it took me a long time to figure out all my food sensitivities). Also, it's common knowledge that untreated symptoms over an extended time period, increase the risk of developing additional autoimmune diseases. IMO, (and this is just my opinion), a fast diagnosis, and prompt, aggressive treatment, leads to a minimum of damage, and faster healing time.

Tex

[tex]

i don't know if it's me not responding to the gf diet, the mc or a bunch of other things combined...the list can go on right? i am trying to stay positive, i really was hoping that taking the entocort would put things in check alot sooner rather than later....but i see i may have to wait a bit longer to see if it works....

As Theresa and Zizzle have pointed out, the GF diet is not sufficient to bring remission, if you have other sensitivities. The damage will continue to accrue to the villi of your small intestine, if you have any additional untreated sensitivities.

Entocort will help to suppress the inflammation in your ileum, and your colon, but it will not prevent the inflammation from redeveloping, and Entocort will not treat the inflammation in your duodenum and your jejunum. That can only be effectively treated by changing your diet to exclude the foods to which you are sensitive. Your GI doc apparently isn't thinking very clearly, if he expects the Entocort to clear up the villus atrophy in your upper small intestine.

Tex

[Martha]

I too was wondering if more intolerances develop the longer things go untreated. But I'm guessing maybe not, from what you all are saying. The longer things go untreated, the longer it will take to heal the gut, but the appearance of "new" intolerances perhaps is not that they are newly developing, but that we are noticing them once the more major intolerances are eliminated? (That was a really long complicated sentence! Sorry.)

[tcorbett]

Good Morning,

From what I've learned and been told, yes, it will take longer to heal depending on how long you had "symptoms". For me - it could have been almost 30yrs of symptoms before the Celiac diagnosis. My gut became so inflammed that I kinow have what they call leaky gut - or gut permeablity. I am sensitive to 25 foods, but in time, that may be decreased. It's the inflammation that needs to heal in my gut, I am on Apriso and making dietary changes as well. It's hard because you can't see what is really happening - its not like a wound on your hand that you can watch and see what helps or not helps. Also, from my studies, I have learned that when you take out a major allergen or intolerance, others show up because your system can now fight those. Some of my doctors see this while others don't - but, I know now that it matters what I eat, I have to be the one in control of it. It's not easy, but I know it will be worth it in the long run. Definately take out dairy, possibly soy too - just to see if there is any improvement - keep a food journal too. I always forget the food journal part. I think I need to start one online or just on my laptop - it's easier for me to type than to write. Good Luck! Theresa in ME