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Mark III? Recovery Time?

hh73

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hh73 Apprentice
hh73
Posted

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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mushroom Proficient
mushroom
Posted

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.

hh73 Apprentice
hh73
Posted
  • Author

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

Dixiebell Contributor
Dixiebell
Posted

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

sb2178 Enthusiast
sb2178
Posted

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?)

Skylark Collaborator
Skylark
Posted

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.

hh73 Apprentice
hh73
Posted
  • Author

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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hh73 Apprentice
hh73
Posted
  • Author

the meds are definitely all gluten free. i checked myself, and also have shown each bottle to the doctor.

  • 3 weeks later...
GFinDC Veteran
GFinDC
Posted

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.

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