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brandy
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Post by brandy »

Hi C.M.

Welcome to the forum! If you don't have Tex's book a link for it is at the top right corner.

Anyways.....I suffered from low iron.

I was off of Entocort when I discovered the low iron.

I tried about three metal based supplements from the heath food store. All with the names of gentle iron etc on them. They worked like laxatives. I discarded them.

I adopted the following "natural methods":

1. Cook with cast iron as much as possible.

2. Dont drink any coffee, tea or iced tea when eating foods that contain iron. Coffee, tea and iced tea prevent the absorption of iron. I think the rule is something like you can have coffee or tea an hour before a meal or 2 hours after a meal. Best to google for confirmation.

3. Try to eat liver 2x3 x per week. (I never did this.) The boyfriend said his Mom used to grind up liver, mold it into liver balls, freeze the balls, and then when she made meatloaf she would thaw and mix 1 liverball in with a pound of groundmeat or pork or lamb etc. He says you can't taste the liver this way. I think there are some good GF DF liver pate recipes on the web but I've never had time to make them.
4. Google list of foods with high iron and get familiar with iron contents.

5. Anything shellfish is high iron if you can tolerate. Canned clams are cheap. A 6.5 ounce can is about 40% of your daily value. (It says 25% on the can but serving size of can is 1 1/2 servings per can so if you eat the whole can you get 40% daily value of iron. Use a small cast iron pan, drain the clams, either "REFINED" coconut oil---must be refined so it will have neutral flavor or olive oil, warm your clams in the oil, add salt and pepper, dump on top of white rice GF pasta and toss. I add other stuff garlic/onion etc but I would not recommend that for where you are at.

6. Black strap molasses http://en.wikipedia.org/wiki/Blackstrap_molasses. Here is a good listing of iron sources. https://huhs.harvard.edu/assets/File/Ou ... n_Iron.pdf. Since you are on the high dose of Entocort you can probably tolerate blackstrap molasses. I would test with small qty as it can also act as a laxative. I would test a teaspoon first and taper up to a tablespoon twice a day. I found I could tolerate blackstrap at the end of a meal. I could not tolerate it say mid afternoon. I needed food in my belly. Some people add it to herbal tea or hot water and drink it. I found I preferred just licking it off a spoon....kind of like it was dessert. If you can tolerate it I would taper up to 2 tablespoons a day. I also use it as a sweetener in any almond flour recipes. I do an equal sub of the recommended sweetener. In the morning glory/paleo muffin in Dees kitchen I use blackstrap as the sweetener. MAKE SURE TO BRUSH YOUR TEETH RIGHT AFTER EATING FROM SPOON OR HAVING HERBAL TEA.

7. When eating any protein make sure to have white potato, sweet potato or carrot as a side dish. The vitamin C in the potato/carrot will help your body absorb the iron from your protein.

Supplements:

As I mentioned I could not tolerate the metal based supplements.

Heme iron (from an animal) is better absorbed by the body than non heme iron (from a plant or rock).

Non heme supplement: I took two-three of these a day (after a meal). http://www.drugstore.com/products/prod. ... pid=455135
They are made from 100% curry leaves. I had no problem tolerating them at all. I tried to take them with a food that contained vitamin C. Important note:
since these are non heme I'm not sure how much my body absorbed. I did not buy form drug store. com....there may be better pricing out there.


Heme supplement: http://www.proferrin.com/ This was pricey in the US. Non prescription. I had to ask at my drug store and they would get it in the next day. It cost around $70.00 US for 90 pills. I was off of Entocort when I used these. I could tolerate them but just barely. I could take one at lunch in the middle of the meal. If I took it at dinner or at breakfast I could not tolerate. It is tough to find a heme soy free over the counter supplement. These are heme and soy free. The problem is they have a red dye and a blue dye and some other chemicals. I believe there are some prescription heme soy free supplements that you can get from your Doc. It is worth while checking into. Someone on high dose of Entocort might tolerate the proferrin better better than I did at least short term. Again....for us.....eating liver is probably the best way to go LOL.

It took me about 4 months after diagnosis to get my levels up to feeling better and that was using my natural techniques listed above, 2-3 curry leave pills a day (don't know if they worked) and one proferrin a day.

I'd get bloodwork again in 6 months and definitely keep an eye on your scores. I did not get transfusion but would have welcomed the rust bag!

CA said:
my GI was no real support. He said it's not auto-immune, no mast cell activity is involved, and basically I'm stuck with it for life and need to decide what works for me in treating it.
Do not get discouraged, it takes awhile for things to heal. I've been in remission for about a year. You will get there!

Let me know if you have questions.

Brandy

PS. forgot to mention I was non-menstruating when I went through this. Definitely stay on top of your scores.
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CanadianMommy
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Post by CanadianMommy »

Thanks so much for all the great suggestions Brandy! I was already considering starting to cook with cast-iron, I will have to go shopping this weekend! I try to include shrimp in my diet as much as possible, it's one shellfish I seem to tolerate well. I may even considering giving liver a try - it seems like a valuable option, and I know I didn't mind the taste when I was younger and my mother used to prepare it for dinner (hopefully my taste buds haven't changed LOL). I'm a little reluctant to try new foods right now, but I'm sooooooo tired and if bringing my iron up can help it's worth the gamble. Tex mentioned the black strap molasses as well, I'm going to go on a hunt this weekend for it and give it a try.

I'm convinced the low iron is a big part of my fatigue (although I know that's part of the MC as well).

I find for now if I take the iron supplements my doctor recommended every few days with a fair size meal, I can tolerate them. I think my body just needed to get used to them. The first few times I had them reminded me of my colonoscopy prep, and every once in a while they still provoke the same reaction (although it could just be a bad day for stress, other irritants, etc and I'm blaming the iron) An iron infusion sounds so much easier, I may have to ask my doctor about this!! LOL

Thanks again Brandy, you have given some great suggestions. Now I just have to remember them through the brain fog! lol
brandy
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Post by brandy »

Hi CM.

CM said

I'm a little reluctant to try new foods right now
Very smart to stick to your existing food list. I saw what you are eating and it is very safe for most MCers. You might check at your health food store to see if you can find the almond milk without the carragean (not sure how to spell this.) I think myself, Leah, Carol etc ate similar food regimens while we were on Entocort and probably for 3-4 months after getting off of Entocort. Eating a narrow category off foods for a good long while is the best way to go for MCers. It eliminates a lot of stress and will speed up healing. When I was diagnosed with low iron it was 10 months after I had taken my last Entocort so I could eat a bit broader category of foods at that time.

I think if you stick with your existing foods and can tolerate liver and shrimp and add them to your protein list that is a good way to go. The veggies that are higher in iron are problematic for several reasons....they are non heme so the iron is less well absorbed and they are also stringy and fibrous which is tough on our gut particularly early on. Liver gets really high marks on the paleo blogs.

On Thursday night I had 2 tablespoons of blackstrap molasses licked off of spoon right after dinner. Friday---after my original above post I had loose stools. Last night after dinner I did another test and added 1 tablespoon of blackstrap to herbal mint only tea. I have not had a bm yet today so I think I am tolerating the blackstrap better when it is mixed in a one herb tea and diluted.
Suggest when you try blackstrap molasses start with one teaspoon diluted in a one herb tea (in a tea bag) right after a meal. I'm better tolerating the diluted version. The off the spoon version is probably too concentrated.

CM said
if I take the iron supplements my doctor recommended every few days with a fair size meal
This is a good way to go.

Brandy[/quote]
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AnnW
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Post by AnnW »

Hi CM:

Welcome to the group!

You have already been given really great advise so I will be brief.

I agree with Tex. I would go for the EnterLab testing with the understanding that it may miss some sensitivites due to the Entocort. It is still well worth the money if it helps you find sensitivities you are not aware of. For the iron deficiency I recommend iron bisglycinate. It is easily absorbed and VERY gentle on the stomach. Solar, Nature's Bounty, Vitacost, and Twinlab Bariatric Support are some brands that carry iron bisglycinate. The Twinlab Bariatric Support brand comes in chewables. For the B12, avoid cyanocobalamin and look for methylcobalamin and start taking it sublingually. For the folate, look for MTHFR, 5-MTHFR, 5-methyltetrahydrofolate, or folinic acid, or salts of the same. Avoid folic acid.

Dr. Ann
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