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

Questions About Celiacs


#1mommy

Recommended Posts

#1mommy Newbie

I was diagnosed with celiacs in September. I have been sticking to the diet, but I don't feel any better. I still have the same pain and the "runs". I have not gained any weight back, infact I think I am loosing more. I recently have had no energy, almost to the point of feeling like I am in a daze all the time. Wow long does it take to feel better? I was diagnosed with blood tests and biopsy. Also has anyone else had insurance issues. My insurance will not cover a dietitian. I found that out after the Dr. sent me to one. The insurance says that they do not list that as being medically necessary for treatemnt. Is it just me or is that stupid? It really made me mad.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Welcome to the board.

I'm sorry to hear you're not getting better. Make sure that you've eliminated all sources of wheat, barley, rye, and oats - including hidden sources or non-obvious sources (so you have to read *all* labels). Also make sure that you're not getting contaminated in your own kitchen by shared toasters, counters, preparation utensils, etc. And that you're not getting contaminated in the preparation of your food (at home or in a restaurant). And that your vitamins, medicines, lotions, and makeup are gluten free as well.

As for the dietician - I wouldn't sweat it. Most of them aren't really up to date on the diet anyway, so your chances of finding a good one are hit or miss. Use the internet; read, read, and read some more; and ask as many questions as you have. This community is probably more helpful than most dieticians. :) (No offense even to the good dieticians out there, but we're thousands strong! :D )

Carriefaith Enthusiast

Some people notice improvements within several weeks, on average most people probably feel better within 3-4 months, and others, like myself need longer. I'm sorry that you are still having problems. I can relate. I was quite ill with celiac disease for several months before my diagnosis and up until about 6 months after I started the gluten-free diet. I would get explosive diarrhea almost daily, with constant gas, and bloating. On top of all that I had by times, extreme fatigue, brain fog, a lack of energy, and joint pains. I was also underweight for a while and looked anorexic. I felt so weak, like I would pass out sometimes. After 10 months on the diet, I realized I was eating chips that were contaminated, when I cut those out of my diet and got more strict with dairy, I started feeling a lot better. After 1 year on the diet, I felt much better.

#1mommy Newbie

I have been reading everything. I was told it could take up to 4 months for the damage to my intestine to heal. He mentioned nutritional injections if my nutrient levels did not improve. I dont want to do that if I dont have to. I not to much underweight. I weigh about 98lbs and am 5'5". I have a very small frame. The most I ever weighed was 130lbs when I was preg with my daughter. I am thinking of going for a fallow up to see what the Dr. thinks.

par18 Apprentice

Hi,

We are all different but I feel there are factors that can contribute to a faster recovery time. I was pretty ill when diagnosed in May 05. I feel I recovered extremely fast. Symptoms went away in a few days "never" to return. It took me about 10 weeks to heal and gain back enough weight to get active and start to feel normal again. That said these were my personal changes that I am certain were most important. First and most important was the decision by my wife and I to make our kitchen 100% gluten free from day one. I know in a lot of cases this is not an option. I wanted to be sure I was not accidentally getting "glutened" from some source other than eating. This worked as I have not had any of my previous symptoms. To me it was a small price to pay. I do not "handle" gluten at all! In the beginning I did not eat any meals outside the home. Now I eat out at least once a week but only after having checked out the establishment throughly. Once again I have been fortunate not to have had any accidents. Buying and preparing naturally gluten free food is second nature now. I don't think of contamination or even getting glutened. I am sure one day it may happen but for now it is just business as usual. Unless you live alone it is almost impossible to do this by yourself. The support of others that live in the same household is going to be the biggest and most important factor in how well anyone does with this lifestyle change.

The comments about other potential food issues is very valid. Keeping a log starting with a basic diet may the the only way one can elimininate things they are not sure about.

Finally the dietitian issue is hit or miss. I had a good one but that is not always the case. You can learn pretty much everything you need asking questions on this board. Hope this helps.

Tom

GFBetsy Rookie
I have been reading everything. I was told it could take up to 4 months for the damage to my intestine to heal. He mentioned nutritional injections if my nutrient levels did not improve. I dont want to do that if I dont have to. I not to much underweight. I weigh about 98lbs and am 5'5". I have a very small frame. The most I ever weighed was 130lbs when I was preg with my daughter. I am thinking of going for a fallow up to see what the Dr. thinks.

You know, that weight would seriously worry me. I'm 5'2", and 115 is too thin for me - I start to look unpleasantly thin at that weight. Given than varying chest sizes (in women) can add or subtract 10 - 20 pounds, I would still be very concerned about that weight.

I checked out some Ideal weight calculators ... here's the site, if you're interested: Open Original Shared Link.

That being said, a possible contributor to your continuing weight loss is your diet. Assuming that you have removed all of the gluten from your diet, what have you replaced it with? There are lots of naturally gluten free foods that are available, but when you are first diagnosed, it sometimes seems easier just to "stop" eating gluten-filled foods, instead of replacing them with gluten free options. For example, lots of people just skip lunch because they can't find a gluten free bread that works well for sandwiches.

So, even though you are probably still having absorption problems (deduced because of the continuing diarhea), you need to sit down and take a look at your dietary intake. (Perhaps this is why you wanted to see a dietician?) Think of all the things you can still eat . .. eggs, meats, fruits, veggies, soups (from scratch - no flour), starches (rice, potatoes, corn, etc.). Then come up with a 1 or 2 week menu plan - breakfast, lunch, and dinner. (Lunch is easier if you just make enough dinner so that you can eat re-heated leftovers for lunch the next day.) Try to work in the recommended fruits and vegetables so you are at least ingesting enough nutrients . . . even if many of them are passing right through. (In fact, you probably need to have a "higher than normal" caloric intake, just because of the malabsorption issues.) Then stick with the plan.

Also, as far as the dietician goes, I'd probably send a letter to the isurance company saying that your visit to the dietician was recommended by your primary care physician and that your lawyer will be contacting them concerning the payment of the claim. See if that will loosen their pockets any.

Ursa Major Collaborator

Hi, and welcome to this board. People with villi damage cannot digest dairy. The reason is, that the enzyme lactase that is needed for digesting dairy is produced by the tips of the villi. But your biopsy showed that those tips are nonexistent right now.

You need to eliminate dairy for now (you might be able to have it again after about six months), it could be what is stopping you from getting better.

Also, as others said, you may need to really make sure you've eliminated all sources of gluten. Do you use soy sauce? Most have wheat in them, but there are gluten-free ones out there. Have you replaced all personal care products (shampoo, conditioner, lipstick, toothpaste, makeup, soap, lotion, vitamins etc.) that contain gluten (like wheat germ oil, barley extract, oat brain) with gluten-free ones? Do you have your own toaster? Do you have scratched non-stick cookware that needs replacing? You also can't use a plastic colander that has been used for gluteny pasta for gluten-free pasta. It is not possible to clean it well enough to be safe.


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



Celiac.com Sponsor (A8-M):



#1mommy Newbie

Thank you for all the help. One other problem is that I can not stand the taste of meat. I eat chicken, turkey and seafood. I have foud a local store that has quite a bit of gluten free things. I found one bread recipie that is ok. and have found a good pasta. My diet before was mostly pasta and bread, so this has been really hard. I eat a lot of salad expecally if we go out to eat. As far as the insurance company. I have tryed that. My Dr. sent them information about why a dietitian was necessary and I threatened to contact a lawyer, but the refuse to pay. It is not a real big deal I just think that it is stupid for them to say that a dietitian is not necessary when the only way to control the disease id diet. The dietitian was not real helpful anyway, but it is just the point.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ElenaM posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      I think I am gluten intolerant

    2. - JulieRe replied to JulieRe's topic in Related Issues & Disorders
      6

      Oral thrush question

    3. - Ceekay replied to slkrav's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Gluten free beer ?

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      6

      Oral thrush question

    5. - Scott Adams replied to oscarbolduc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Advice while waiting for testing


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    catsrlife
    Newest Member
    catsrlife
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ElenaM
      Hello everyone. I am Elena and am 38 years old. I suspect I have a gluten intolerance even if my celiac panel is ok. I have the following symptoms : facial flushing, Red dots not bumps în face, bloating abdominal distension, hair loss, depression anxiety even with meds and even bipolar. Fatigue extreme to the point of not being able to work. All of these after I eat gluten. Could I have non celiac gluten sensitivity? Thanks anyone else with these symptoms?
    • JulieRe
      Hi Everyone,  I do appreciate your replies to my original post.   Here is where I am now in this journey.  I am currently seeing a Naturopath.  One thing I did not post before is that I take Esomeprazole for GERD.  My Naturopath believes that the decrease in the gastric acid has allowed the yeast to grow.    She has put me on some digestive enzymes.  She also put me on Zinc, Selenium, B 12, as she felt that I was not absorbing my vitamins. I am about 5 weeks into this treatment, and I am feeling better. I did not have any trouble taking the Fluconazole.  
    • Ceekay
      I'm sure it's chemically perfect. Most of them taste lousy!        
    • Rejoicephd
      Hi @JulieRe.  I just found your post.  It seems that I am also experiencing thrush, and my doctor believes that I have fungal overgrowth in my gut, which is most likely candida.  I'm seeing my GI doctor next week, so I'm hoping she can diagnose and confirm this and then give me an antifungal treatment.  In the meantime, I have been working with a functional medicine doctor, doing a candida cleanse and taking vitamins. It's already helping to make me feel better (with some ups and downs, of course), so I do think the yeast is definitely a problem for me on top of my celiac disease and I'm hoping my GI doctor can look into this a bit further.  So, how about you?  Did the candida come back, or is it still gone following your fluconazole treatment?  Also, was it awful to take fluconazole?  I understand that taking an antifungal can cause a reaction that sometimes makes people feel sick while they're taking it.  I hope you're doing better still !
    • Scott Adams
      I'm so sorry you're going through this—the "gluten challenge" is notoriously brutal, and it's awful to deliberately make yourself sick when you've already found the answer. For the joint pain, many people find that over-the-counter anti-inflammatories like ibuprofen can help take the edge off, and using heating pads or warm baths can provide some direct relief for the aches. For the digestive misery, stick to simple, easy-to-digest foods (like plain rice, bananas, and bone broth) and drink plenty of water and electrolytes to stay hydrated. It feels like the longest month ever, but you are doing the right thing to get a clear diagnosis, which can be crucial for your long-term health and getting the proper care. Hang in there; you can get through this! This article, and the comments below it, may be helpful:    
×
×
  • 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.