Jump to content

  • 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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748
    PatientOne
    Newest Member
    PatientOne
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.