Overwhelmed

Alix · Post by **Alix** » Sat Oct 12, 2013 2:43 pm

Diagnosed with MC in June '13 after 2 yrs of ahem.:)
I have been tested for celiac, food allergies and had
extensive blood testing. Positive for celiac associated
allele. Have been gluten free for couple years before
diagnosis.

The oddest result of the tests is a cholesterol level
of 265! Holy*&^%$. I was shocked as I have always
had very LOW cholesterol levels. I weigh 110 lbs, at most,
I exercise, blah blah. I rarely eat meat,
although did the SCD after diagnosis. My body, however,
does not take kindly to lots of meat. Also tested positive for
egg allergies.

I simply want to vent. I am frustrated with finding food I
can tolerate, eat and gain some weight. I'm down to mostly
organic veggies. Energy to meet responsibilities/work is waning.

Frustrated with docs. Gastro doc throws meds at me. ND is
better yet wants me to spend $$ I don't have on more tests
or supplements. Is there not one good diagnotician left in
this country.

Ah, there, I feel better having vented.

I have followed this forum since June. The name of the forum was the
clincher to keep coming back. :)

Thank you and best to all.

Jeanemcl · Post by **Jeanemcl** » Sat Oct 12, 2013 3:57 pm

Good topic title...overwhelmed. I so get it. This is my third bout this year and I have now put on my detective hat. My problem is that I believed my GI when she said diet doesn't help. Last spring I said maybe I should go gluten free. She said ok, try it, but I knew she thought it wasn't going to be the answer. I didn't check dressings, sauces, soups etc. , but I did stop breads, pastas, etc. Anyway, it came back and I am trying to get back on the right track again. Getting up enough nerve to ask for an IGA test and then maybe a try at the lab testing. I am still questioning whether I could figure it out as well using the elimination diet. The thought of eating only a very limited number of foods is unsettling to me right now. I think I have to keep my spirit going and look for things to be grateful for. If I could just wrap my head around thinking that food is just fuel to me, I might stop pouting......got a ways to go.

JLH · Post by **JLH** » Sat Oct 12, 2013 4:21 pm

Alix, glad you found us.

Post by **tex** » Sat Oct 12, 2013 8:49 pm

Hi Alix,

Welcome to our internet family. Providing an avenue for venting is definitely one of the functions of this discussion board. MC is a very frustrating disease, and many/most of us have also been frustrated by the inability of our doctors to understand the disease and offer treatment options that actually resolve our symptoms (for longer than short-term intervals), as they aggressively deplete our bank accounts.

I see that you have discovered that eating a low-cholesterol diet does not necessarily correlate with a low cholesterol blood level. It seems that doctors are wrong about a lot of health issues, unfortunately.

When we have active MC, fighting the intestinal inflammation and healing the gut requires the lion's share of our energy, so that explains why we we are constantly running out of steam whenever the disease is active. A relatively high-protein diet is necessary in order to promote intestinal healing, but adequate protein can be difficult to come by, since our selection of dietary proteins is often severely restricted by the fact that we are now sensitive to many of the most common proteins. Fine-tuning our diet can become quite a challenge, as you are well aware.

Again, welcome aboard, and please feel free to ask anything.

Tex

Post by **tex** » Sat Oct 12, 2013 9:10 pm

Jean wrote:If I could just wrap my head around thinking that food is just fuel to me, I might stop pouting......got a ways to go.

It might help if you change the way that you think about food. Food is more than just fuel. Food is something that we can ingest to nurture our body — a dietary item that enables us to thrive.

By contrast, the items in our diet that cause us to react adversely, do not meet the definition of food, because not only do they not nurture us and cause us to thrive, but they are actually toxic to our digestive system and to our health in general.

Recognizing that distinction makes it much easier for me to avoid confusion and regret. These days, when I come across something that I used to view as food, but it now causes me to react, I no longer see food — instead, I see an item that is poison to my body, and avoiding it without regret is automatic.

Tex

Jeanemcl · Post by **Jeanemcl** » Sun Oct 13, 2013 2:31 am

Good point Tex. I will work on that.

Blueberry · Post by **Blueberry** » Sun Oct 13, 2013 5:05 am

MC is a very frustrating condition and dealing with the medical establishment not enjoyable either. Good luck in finding answers.

Just something to mention concerning cholesterol, keep in mind that cholesterol is possibly just one of many risk factors for heart disease. I believe cholesterol testing receives a bulk of the attention due to all the advertisements seen on TV, but if looking to prevent artery plaque growth much more can be done.

I mention this because I found out a few years ago, despite being young, I have plaque growth in an artery. With out taking preventive measures, I was at high risk for a heart attack. This contradicted what my cholesterol levels said. I had always tested low with my cholesterol levels, even mentioned by a doctor that my risk for heart disease was low, but later a heart CT scan found the plaque growth.

An information web sight you might find helpful is Dr. Davis's. He is a cardiologist that has blogged about his work, mentioning what works and what has not for his patients.

http://blog.trackyourplaque.com/

Dr. Briffa of the UK also has been running many articles on heart disease prevention and possible risk factors cholesterol levels play.

http://www.drbriffa.com/blog/

JFR · Post by **JFR** » Sun Oct 13, 2013 5:28 am

tex wrote:
Jean wrote:If I could just wrap my head around thinking that food is just fuel to me, I might stop pouting......got a ways to go.
It might help if you change the way that you think about food. Food is more than just fuel. Food is something that we can ingest to nurture our body — a dietary item that enables us to thrive.

By contrast, the items in our diet that cause us to react adversely, do not meet the definition of food, because not only do they not nurture us and cause us to thrive, but they are actually toxic to our digestive system and to our health in general.

Recognizing that distinction makes it much easier for me to avoid confusion and regret. These days, when I come across something that I used to view as food, but it now causes me to react, I no longer see food — instead, I see an item that is poison to my body, and avoiding it without regret is automatic.

Tex

Me too, I consider the foods that I used to eat but now make me sick as poison and have no desire to eat them (or perhaps only an occasional and short-lived desire). I can remember enjoying them but my memory of living in the bathroom is even more prominent and I don't want to go back to that time. Success here is tied both to knowing what to eat and what to avoid and to working on attitude. I try to look at my limited diet as a gift I give myself rather than a deprivation.

Jean

Post by **tex** » Sun Oct 13, 2013 8:53 am

Blueberry,

Yep, Dr. Davis and Dr. Briffa are definitely 2 of the good guys in medicine. From the webpage you cited:

Omega-3 fatty acids are physiologically necessary, normalizing multiple metabolic phenomena including augmentation of parasympathetic tone, reductions of postprandial (after-meal) lipoprotein excursions, and endothelial function. It would indeed make no sense that nutrients that are necessary for life and health exert an adverse effect such as prostate cancer at such low blood levels. (Recall that an omega-3 RBC index of 6.0% or greater is associated with reduced potential for sudden cardiac death.)

That observation in itself pretty much blows the case against fish oil out of the water. The main problem with most researchers in the medical arena is that they have been indoctrinated by their training to never think for themselves. Because of that serious shortcoming, when assimilating their data, most of them almost always tend to overlook the obvious, and focus instead on some obscure, irrelevant issue that consequently distorts their conclusions.

And evidence such as this is pretty tough to dispute, too:

Since the Japanese typically eat about 8x more omega-3 fatty acids than Americans do and their
blood levels are twice as high, you’d think their prostate cancer risk would be much higher…
but the opposite is the case.

Tex

DebE13 · Post by **DebE13** » Sun Oct 13, 2013 12:05 pm

The right attitude with food comes with time and self education (reading everything here). I had a severe attachment to food and it was literally years of grieving the loss of my past diet before I developed the same mentality as Tex and Jean mentioned. Surprised my family made it through many dinner times of me crying at the table or misplaced anger because I couldn't eat what they did. For the most part, I have the attitude of "you couldn't make me eat that if you tried." Sure, I'd love a good bowl of pasta, pizza, or French toast but I now I briefly have a good memory of it then replace it my reality of now- is it worth getting sick for days by eating this? It's almost repellant. I frequently sniff my husband's plate to enjoy the smell and call it good.

I made my breakfast this morning- turkey burger and a slice of Udi's bread. That's it. I made my husband buttered toast with an omlet that had bacon, potatoes, onions, garlic, yellow pepper, mushrooms, and cheese. Eating together has always been fun and has become quite a challenge. I still have to work on the frustrations on spending more time in the kitchen to make two meals with his meal being the one that takes the longest. It's not his fault, but I now dislike cooking and just want to get in and out. Some days are easier than others but it's worth the effort.

Leah · Post by **Leah** » Fri Oct 18, 2013 11:14 am

Hi Alix. I didn't see your post until today. Welcome.

You didn't really mention whether your symptoms have gotten any better, so I'm flying blind here.

If you have read some of our posts, then you know that all the meds the docotrs want to prescribe are not bad. Many of us have taken/are taking budesonide and are grateful for it. Although it masks food intolerances, it can give you your life back while you make the necessary dietary changes for healing. Many of us opt for the Pepto Protocol. Some try to do it with just diet.

I, like you, ate very differently ( I am a personal trainer) before my MC dx. I had to look at food differently. I still believe that fruits and vegetables are very nutritious, but they just don't work very well for healing MC. Too much fiber. I had to adopt a meat ( protein), white rice, cooked veggie based diet for six months to heal my gut. I have since added many foods back in, but still am gluten, dairy, soy, and most fruits free. I know what bothers me now and have learned what supplements to take to feel good. Antihistamines also play a role in my remission.

Be patient and open minded. This process takes time. We are here to help.
Good luck
Leah

Zizzle · Post by **Zizzle** » Fri Oct 18, 2013 11:20 am

Welcome Alix!

Frustrated with docs. Gastro doc throws meds at me. ND is
better yet wants me to spend $$ I don't have on more tests
or supplements. Is there not one good diagnotician left in
this country.

I feel exactly the same way. I'm so frustrated by the medical establishment...on all sides!! Grrr!!!

Regarding your cholesterol level, do any other members of your family have high levels? Might be familial hyperlipidemia, and unfortunately, diet doesn't seem to help. I know a 28 yr old woman on statins for this!