Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mark III? Recovery Time?

hh73

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,175
    • Most Online (within 30 mins)
      7,748
    Janice Emmendorfer
    Newest Member
    Janice Emmendorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...