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

Worse After Celiac Diagnosis

Jerri Ward

Recommended Posts

Jerri Ward Apprentice
Jerri Ward
Posted

I was told that after I was diagnosed with Celiac Disease that I would feel so much better. That my tiredness would be better, my depression would be better and my pain level would ease. Well, just the opposite has happened. I have been gluten-free for 18 mths. In that time I have lost 60 lbs. My Vit. D level has dropped so low that I have to take 50,000 units a month. I was having to take it weekly. up until last month. My iron is too low as well as my B12. My dr. is trying to figure why I cannot absorb it. I am tired all of the time. My pain level is not on any scale. They are doing tests to find out what is causing the pain and my dr. is refering me to a specialist at a Major University Hospital. I suffer from major depression. I did not think that it could get any worse, but since the Celiac started, it has gotten worse. I have completely gone down hill. This is something I wish I had never heard of.

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Jerri, have you considered the possibility of other intolerances? I am intolerant to all lectins, not just gluten. Rice will give me the same symptoms as gluten, and so will eggs and soy. Dairy is terrible as well. Both dairy and soy can cause blunting of villi and malabsorption, not just gluten.

I used to have intolerable joint and muscle pain and was on codeine 24 hours a day until I eliminated all lectin foods and foods high in salicylates (salicylic acid, which is what Aspirin is). Now I am not 100% free of pain (I am not sure that will ever happen, the damage from being poisoned for over 50 years of my life may be too great), but I very rarely need painkillers now.

I also used to be anemic with extremely low ferritin counts, and had low vitamin D levels. They are perfect now.

Please follow the links in my signature to find out more. It might just be the key to your problems.

Lisa Mentor
Lisa
Posted

Jerri:

I am sorry that you have had it so rough. How were you diagnosed?

What are you doing regarding the gluten free diet.? Dairy offen can cause intestinal distress. Have your checked all your toiletries. After 18 months, I would assume that you have check for hidden gluten. If diligent, you should have felt a great deal of improvement.

Celiac, as I am sure that you know can be controlled solely by dietary restrictions. Have you been diligent with that?

There are other things that can mimic celiac symptoms.

I am sorry for so many questions...

ravenwoodglass Mentor
ravenwoodglass
Posted
I was told that after I was diagnosed with Celiac Disease that I would feel so much better. That my tiredness would be better, my depression would be better and my pain level would ease. Well, just the opposite has happened. I have been gluten-free for 18 mths. In that time I have lost 60 lbs. My Vit. D level has dropped so low that I have to take 50,000 units a month. I was having to take it weekly. up until last month. My iron is too low as well as my B12. My dr. is trying to figure why I cannot absorb it. I am tired all of the time. My pain level is not on any scale. They are doing tests to find out what is causing the pain and my dr. is refering me to a specialist at a Major University Hospital. I suffer from major depression. I did not think that it could get any worse, but since the Celiac started, it has gotten worse. I have completely gone down hill. This is something I wish I had never heard of.

In addition to the good advice already given have you made sure to get rid of all possible sources of contamination, everything from soaps and shampoos, drywall dust and compound, glues, chalk for chalkboards, meds you take etc. Are you trying to eat out, do you drink distilled alcohols, do you eat alot of mainstream foods? Before I got relief from my depression and neuro symptoms I had to really ferret out the second hand gluten and CC sources and eliminate them.

Make sure you are absolutely gluten free, many of us think we are when in reality we are getting CC'd at every turn.

Jerri Ward Apprentice
Jerri Ward
Posted
  • Author
In addition to the good advice already given have you made sure to get rid of all possible sources of contamination, everything from soaps and shampoos, drywall dust and compound, glues, chalk for chalkboards, meds you take etc. Are you trying to eat out, do you drink distilled alcohols, do you eat alot of mainstream foods? Before I got relief from my depression and neuro symptoms I had to really ferret out the second hand gluten and CC sources and eliminate them.

Make sure you are absolutely gluten free, many of us think we are when in reality we are getting CC'd at every turn.

I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

deesmith Apprentice
deesmith
Posted
I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

Jerri,

I don't know if this will help you any, but:

I just found out that I was not absorbing calcium. This triggered my parathyroid gland to stop producing it, which in turn caused my blood to go searching elsewhere-- so it "grabs" it from my bones. (Ouch!) I asked the doctor if this is why I am having so much bone pain and he said that may be part of it. I have been gluten free for six months, so he suggested I take 1600 mg of Calcium supplements per day. I am guessing that he assumed that my intestines have begun to heal so I can absorb the supplements. He's having my thyroid checked, my Vit D, and a bone density test done. (Obviously you've already been through much of this and had your Vit D done and the bone density test)

Just wondering if you know what your calcium level is and if this may be part of your problem. I didn't see it on your list.

Good luck with your upcoming appointment with the specialist. I hope you get some resolution.

Ursa Major Collaborator
Ursa Major
Posted
Jerri,

I don't know if this will help you any, but:

I just found out that I was not absorbing calcium. This triggered my parathyroid gland to stop producing it, which in turn caused my blood to go searching elsewhere-- so it "grabs" it from my bones. (Ouch!) I asked the doctor if this is why I am having so much bone pain and he said that may be part of it. I have been gluten free for six months, so he suggested I take 1600 mg of Calcium supplements per day. I am guessing that he assumed that my intestines have begun to heal so I can absorb the supplements. He's having my thyroid checked, my Vit D, and a bone density test done. (Obviously you've already been through much of this and had your Vit D done and the bone density test)

Just wondering if you know what your calcium level is and if this may be part of your problem. I didn't see it on your list.

Good luck with your upcoming appointment with the specialist. I hope you get some resolution.

Calcium supplementation is a good idea. But it has to be combined with magnesium and vitamin D to be useful to our bodies. Since most people are more likely to be deficient in magnesium than calcium, a good supplement would be one that contains calcium and magnesium 1:1.

I was having bad knee and foot pain just recently, and my naturopathic doctor thought it might be from lack of magnesium. He said that not getting enough magnesium can cause joint and muscle pain, too, as well as other problems.

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

Celiac.com Sponsor (A8-M):


Jerri Ward Apprentice
Jerri Ward
Posted
  • Author
I was diagnosed with bloodwork and biopsy. I am very careful with everything that I eat. I check all labels. I cannot tell you the last time that I ate out. I have checked meds that I take and hair products and makeup. I am very careful. I have to be. In 96 I had most of my colon removed, so I don't have very much left to play around with. I don't want to end up with a bag. Thank you all for your suggestions. Sometimes I feel like I am in an ocean swimming backwards.

They checked everything in my bloodwork and everything was o.k. except my Vit. D which I take 50,000 units monthly and my B12 and my iron which they had not decided what to do about, because I am unable to absorb them. I wasn't as sick with the gluten and wheat as I am now. I have had about enough of this as I want. I would just like to sit down and have some real food. Be able to go out to eat once and a while. Where I live there are no gluten-free products available. When I have to go into the hospital, the nurses don't even know what I am talking about. My dr. told me that Celiac Disease was going to be the key to making me all better. Well I guess I must have picked up the wrong. key.

CarlaB Enthusiast
CarlaB
Posted

There have been many good suggestions here. The thing is, you should be feeling better if you're sure you've been gluten-free for 18 months. I would suspect there might be something else in addition to the celiac.

I also have Lyme Disease, and many of us on Lymenet's message board also have gluten intolerance or celiac though no connection between the two has been proven or even suggested.

With a positive biopsy, you definately have celiac, maybe you have other food intolerances as many do, but looking at your symptom list in your signature, you may want to check out the symptoms of Lyme -- www.canlyme.com.

PM me if you have more questions about Lyme and diagnosing Lyme as I don't want to take the focus of this thread completely off celiac.

It would seem that even if you do have other intolerances you should have at least seen some improvement with eliminating the gluten.

loraleena Contributor
loraleena
Posted

Have you looked into Candida overgrowth. This is very common in celiacs and can look very similiar. There are 100's of symptoms it can cause, including the ones you listed. I urge you to read more on line.

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.