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

Recently Diagnosed, Looking For Hope/help

lesquee

Recommended Posts

lesquee Newbie
lesquee
Posted

Hi everyone,

I just got my official diagnosis yesterday, but have been gluten-free for a week and a half. I was super miserable before I made the change- constant heartburn, bloating, sever anxiety and depression- and am now feeling more functional, but I'm still very worried and was hoping you could give some encouragement. I still feel heartburn and bloating soon after eating, and it usually lasts about 24 hours. I'm going through all kinds of scenarios of other mysterious things I could be missing (am I allergic to nut flours? Fructose malabsorption? Candida? SIBO? Parasites?). I've eliminated dairy since I have always had trouble with it anyway.

Basically my question is, is it normal to still feel like food isn't digesting properly? Should I keep wildly searching for other problems, or do I just need to be patient? I have this fear that things will never get better, and I desperately want my life back (physical activity, intimacy with my husband, no swings into depression).

Thanks,

Erin

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

Celiac.com Sponsor (A8-M):


adab8ca Enthusiast
adab8ca
Posted

Hi

First, welcome! My GI told me that I should feel better within a few days. The dietician I saw said it would probably be a year before I started to feel better...I am just over one year in and it was definitely the latter part of that year that I started to feel better...One week is no time at all..Not to freak you out! Avoiding dairy is good but it is way too soon to worry about other intolerances. Take it one day at a time and be kind to yourself...

Ada

sa1937 Community Regular
sa1937
Posted

Welcome, Erin! I think you just need to be patient, difficult as it is when we want to feel well instantly. We didn't get this way overnight and it's going to take awhile to heal.

I think it's just too soon to assume you may be reacting to all those other things. It is good that you gave up dairy right away...you may be able to introduce it again later. That was harder for me than giving up gluten.

Our bodies are pretty wonky right away and it just takes time. Keep reading the forum and you'll find many of your questions are also questions others have. And feel free to ask any questions you may have.

sarahw Rookie
sarahw
Posted

Hi Erin,

We are in the same boat. I was diagnosed 6 weeks ago--i just joined this forum yesterday. It has been a difficult 6 weeks but I will say that I am VERY slowly feeling better every day. I think that it gets easier once you get a hang of the gluten free diet and I dont expect to have it mastered for many more months/year. The depression/anxiety is still terrible though. I want to be back to my old self too and feel sorry that I am so depressed/anxious around my husband and I have no energy for my 18-monht old daughter. I had a little bit of anxiety/depression before my diagnosis but it has gotten worse. I am taking some natural supplements/amino acids (GABA, Stabilium, and a supplement called Calmatrine) to help with that. I also went ahead and did the stool sample test by Enterolab to determine if I have any parasites etc and if I am also allergic to soy, dairy and eggs. I am willing to do whatever I have to to feel better so I wanted to know what else is going on so I can start feeling better. Are you taking sublingual B-12 supplements? That may help with your depression also. Other people say it will probably take at least a year to feel better so I am trying to be patient but it is difficult. Good luck to you

pricklypear1971 Community Regular
pricklypear1971
Posted

Try probiotics and digestive enzymes ( gluten free, of course!). I use pb8 (but I think it has milk), and Digest Gold (don't know about the milk).

Both help a lot in the beginning, especially.

AVR1962 Collaborator
AVR1962
Posted

Erin welcome. It does take awhile for the system to get back on track and most times alot of healing has to take place. You mentioned heartburn and that could mean that you had alot of acid in your stomach which does alot of damage. If that is still an issue you will need to take steps to protect your stomach. If not on meds, use Pepto before ou eat foods with an acid base, any caffeine or alcohol which are all hard on the stomach. Best actually to avoid these and go with low acid foods if you are having stomach issues.

You mnetioned that it sometimes feels like the food is having a hard time digesting, it just might be the case, I remember dealing with that. I had to cut back on my meat intake, eating on 4 ounces or less per serving. Protein is very important to the healing process but meats can be hard for the stomach to break down. Keep it simple, keep it whole foods, avoid the gluten-free products for now and there could be other things that you may find giving you issus but it's hard to say what unless you go to a simple diet. Cut out the foods with additives for right now if you can and start keeping a journal, this will help alot.

BabsV Enthusiast
BabsV
Posted

Hi, Erin. Welcome. I'm a relative newbie to all of this also -- today is the 3-month anniversary of my diagnosis.

I was having a lot of the same issues you were having after being gluten-free for almost 2 months...posted about it on the forums and several members posted really good tips. I've added in probiotics and digestive enzymes and that definitely helps. Also started keeping a much more detailed food diary so I could pinpoint what foods seemed to set off abdominal pain, etc. I'd already cut dairy out of my diet since it was causing problems but I also ended up cutting out most fruits, corn, nuts, raw vegetables and beans, basically anything that seemed to take an effort to digest. I've been sticking to rice, potatoes, small amounts of lean proteins (chicken and turkey mostly but did just try some pork tenderloin a couple of days ago and that went ok!), egg whites, cooked veg, bananas, etc. Not exactly an exciting diet but it has made a difference. I'm not eating any gluten-free replacement foods at this point; I'm sticking to simple whole foods. I'm also eating small meals more often...eating a 'normal' size meal seems to overwhelm my system at this point. It is rather a hassle at times since it seems like I am always thinking about food or eating but it really has made a difference.

I'm 3 months in and while I am definitely better than I was prior to diagnosis I am far from being in great shape. I figure I was sick for some time so it is going to take some time to get better. I have no patience so want to be better now but I'm learning I have to take it day-by-day and make the most of it. Some days are good days and some aren't so great but they're all better than what they were in July when I was so so ill.

Also, I have a history of reflux problems so my doctor has me on 20mg of Omeprazole two times a day. I can say that the days that my gut seems irritated the reflux symptoms appear. On the days my gut seems more settled I don't have the reflux problems. My doctor is hoping that once I'm healed the reflux issues will settle down. *fingers crossed*

Good luck and again welcome. The wealth of experience the members of these forums share is amazing and honestly, it has been more helpful to me on many occasions than dealing with my doctors!

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

Celiac.com Sponsor (A8-M):


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. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.