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hh73

Mark III? Recovery Time?

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I was officially diagnosed with Celiac Disease 5 weeks ago. Since then, I have cooked all my meals 3 times a day, being very strict about the gluten free diet. My only symptom is fatigue. I have vitamin D deficiency as well as iron deficiency. My hemoglobin is good. I am in my early 20s.

In a way, this is the best thing that could have happened for my diet. Before diagnosis, I used to eat what most college students do: cheesesteaks, pizza, mashed potatoes, etc. I now eat fresh fruits and vegetables, some white meats, very little sodas, lots of milk, juice and water.

My fatigue is not going away, and I am seeing no changes. When should I expect to see improvement?

Also, my doctor said the level of cilia destruction was "Mark III" (I think he said Mark, but I'm not sure. It was definitely a 3 though.) Where can I read more about this? He briefly mentioned that the phrase meant it was thoroughly destroyed. What's the highest level of destruction? How long can it take for me to get better? Is there anything I can do to help, such as Exercise?

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I was officially diagnosed with Celiac Disease 5 weeks ago. Since then, I have cooked all my meals 3 times a day, being very strict about the gluten free diet. My only symptom is fatigue. I have vitamin D deficiency as well as iron deficiency. My hemoglobin is good. I am in my early 20s.

In a way, this is the best thing that could have happened for my diet. Before diagnosis, I used to eat what most college students do: cheesesteaks, pizza, mashed potatoes, etc. I now eat fresh fruits and vegetables, some white meats, very little sodas, lots of milk, juice and water.

My fatigue is not going away, and I am seeing no changes. When should I expect to see improvement?

Also, my doctor said the level of cilia destruction was "Mark III" (I think he said Mark, but I'm not sure. It was definitely a 3 though.) Where can I read more about this? He briefly mentioned that the phrase meant it was thoroughly destroyed. What's the highest level of destruction? How long can it take for me to get better? Is there anything I can do to help, such as Exercise?

Hi and welcome to the forum. Good for you on being strict about the diet - you will heal a lot faster :)

Fatigue is common if you have developed nutrient deficiencies and energy should return as you get your D and iron levels back up. Make sure you are taking enough D as you have to refill your tank, so to speak, before you go on a maintenance dose. Depending on how low it was you probably should at least be taking 50,000 iu once a week for the first 2-3 months. Yes, staying away from fast food is a lot healthier way to eat, although often takes a little more effort, an effort that is well worth it.

You are early in the recovery process so do not be discouraged. You can expect to see significant improvement by three months if you are strict about keeping gluten out of your diet, your cookware, and your personal care products, and if you can bring up your nutrient deficiencies. One thing you should do is eliminate milk, cream, ice cream for a while. With damaged villi you are not going to be making enough lactase in your small intestine to be able to digest these. Some people can get by by using Lactaid tablets when they consume these products - it will be trial and error. This may be why you have not yet noticed any improvement.

You doctor was referring to the Marsh scale of damage to your villi. If you google Marsh 3 and celiac, you will find a description of the degrees of damage and other information about celiac. Marsh 4 is the highest degree of damage. You healing time depends on how strictly you stick to the diet, upon your individual genetics, and upon your degree of damage - it is unique for each person. If no other food intolerances pop up along the way (yes, sorry, that can happen), six months is a good goal post to aim for for feeling a lot better. And no, sorry, exercise will not make you heal faster although it will always make you feel better :)

Good luck on your gluten free journey, and fire away with any questions you have.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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One question I have is why do I feel so tired after taking my meds? Here's what I am on

Nexium

Citrical + D

Vit D supplement

Vit B supplement + iron

Iron (1000mg/day)

MultiVitamin

Claritin

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Hi. I'm not sure why the meds would be making you tired. Are you sure that all of them are gluten free?


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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Some people have problems with the PPIs (nexium). If that was a med you needed pre-celiac diagnosis, you may no longer need it and could ask your dr. about easing off it. If you showed severe gastritis or ulcers, etc., it's probably not worth asking or trying.

Magnesium, folate, b-12, and zinc are also nutrients that you may be low on. Fish oil and omega-3s would help reduce inflammation a little. If you're not sleeping well, try taking an OTC magnesium to see if that helps. Sub-clinical deficiencies are difficult to diagnose. Are you still eating enough carbohydrates from potatoes, sweet potatoes, rice, buckwheat, etc?

And, yes, it takes time. I felt 40% better after about 3 weeks, 60% better after 6 weeks, and still only at 85-90% at four months. My biopsy was negative, so I would imagine that detectable severe celiac damage would lead to slower recovery times. On the other hand, I have traveled a fair amount and eaten a couple of things that were clearly not what I was told/thought they were. Total avoidance is wiser if possible. (and you've done the replace wooden, non-stick, plastics, toiletries, etc?)


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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One question I have is why do I feel so tired after taking my meds? Here's what I am on

Nexium

Citrical + D

Vit D supplement

Vit B supplement + iron

Iron (1000mg/day)

MultiVitamin

Claritin

Welcome. Your biopsy was Marsh 3, which is the third level on a 4-step scale. Marsh 4 is relatively rare. Marsh 3 means there is a fair amount of damage and it may take a while for you to feel better. Most people who have Marsh 3 damage are truly healed in 2-5 years. As you heal and start absorbing your vitamins better you'll probably have more energy. Being low vitamin D can make you tired. You might also make sure your doctor has checked your thyroid, as celiac and thyroid problems often happen together.

I suspect the tiredness after your meds is from the Claritin. It's a "non drowsy" antihistamine but it can still make some people tired. It just doesn't make people extremely sleepy like Benedryl. You may find that your allergies improve on the gluten-free diet and you can take less of it.

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I had a Dexa Scan bone density test today. My T score was -1.5 for my spine, meaning that I have osteopenia. It's so frustrating to be hearing all this bad news from the doctor! Tomorrow is my first appointment with a dietician, and I will also be hearing about the results of some of my recent labs. How do you prevent this from taking over your life, physically and psychologically? Today the fatigue was as bad as it was before diagnosis - I had to take a 5 hour nap at 2pm

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You can adjust to the gluten-free lifestyle, just give it time. It gets easier after you have a few years experience. It doesn't go away though, so it is some thing you do have to be aware of from now on. But it doesn't have to be the main focus of you life once you get used to it.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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