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 Celiac.com!
    eNewsletter
    Donate

ADD


windee

Recommended Posts

windee Rookie

On top of depression and anxity, I have now found out I also have ADD. I am not responding to meds for depression. Do other Celiacs find they also have ADD? Is this common? I just want my head back. I have been gluten free since January and diagnosed the day after Thanksgiving by biopsy.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It is not unusual for us not to respond to meds for depression. Some recent research says that if folks don't respond to the meds they should be checked for celiac as celiac can cause depression and anxiety. Are you being very strict with the diet and taking the needed precautions in the home like getting a new dedicated toaster, changeing scratched pans, replacing colanders and wooden utensils and not baking with wheat flour for others? Have you checked to be certain that the meds you are on are gluten free? Doctors won't know so we need to check with the maker. It often takes some time to heal and we do have to be very strict with the diet. I don't know if the ADD is celiac related or not but if they give you meds for it be sure to check those and also check any supplements you take. Wheat and barley grass can be in the ingredients and the label will still say gluten free so be sure to read the whole label.

I hope you are feeling better soon.

Link to comment
Share on other sites
Pyro Enthusiast

I'm going to check out GAPS to help combat ADD.

The lady behind GAPS associates stomach problems with ADD and I've felt the same way. Going on Adderall has made a big difference in my quality of life, but I think now is the time to switch to XR because the instant releases seem to be contributing to my ups and downs in energy sometimes mood, or even might be the cause since this new generic seems to wear off so quick. I've struggled with depression in the past too, sometimes VERY severe, but never went on meds until now. Though psychedelic stimulants (not recommending them, just saying) and now the adderall have helped me keep focused.

Sometimes I do get sad again but starting a career has been a big boost. Though I suspect using GAPS do reestablish my gut flora is going to best course of action long term. If my digestive issues remain, even though I might not hit such deep lows with my mood, my energy or ambition might still dip and make me feel crappy. Getting in balance should help this not be so random and/or tedious (want to be just tired not half dead!), and give a lot more vibrancy to pull from.

BTW don't just jump into adderall because I like it.

Link to comment
Share on other sites
windee Rookie

I have bought everything new for myself kitchen wise. I do not eat out. I have checked all the meds and vitamins I take. I feel like my next issue will be OCD! I am feeling better body wise and allot has cleared up and gone away. It is just the depression, anxiety, and now ADD. I am really struggling with these. I go to therapy once a week and a psychiatric DR. to get the meds right. The meds do not help much so far. I would not even be on here if it were not for spell check. It is a daily struggle for me right now. I have applied for disability as I cannot get through an interview with my memory or anything. My Dr's are all encouraging this. I really feel stupid. I can see celiac all the back to school and the ADD also. So I am going through the anger stage of being 57 and finding all these things out now. I feel I missed out on allot. I just want it fixed. Sorry to ramble on in my self pity trip.

Link to comment
Share on other sites
cap6 Enthusiast

I have bought everything new for myself kitchen wise. I do not eat out. I have checked all the meds and vitamins I take. I feel like my next issue will be OCD! I am feeling better body wise and allot has cleared up and gone away. It is just the depression, anxiety, and now ADD. I am really struggling with these. I go to therapy once a week and a psychiatric DR. to get the meds right. The meds do not help much so far. I would not even be on here if it were not for spell check. It is a daily struggle for me right now. I have applied for disability as I cannot get through an interview with my memory or anything. My Dr's are all encouraging this. I really feel stupid. I can see celiac all the back to school and the ADD also. So I am going through the anger stage of being 57 and finding all these things out now. I feel I missed out on allot. I just want it fixed. Sorry to ramble on in my self pity trip.

I understand what you are saying! Seems like it takes nothing to distract me from what I am doing. I have trouble focusing on one thing and completing the task. I too was older when diagnosed - 59 - and it makes me angry too. Angry to be this old, finally retired and don't have the energy to do what we wanted to do. The energy is coming back.... but too slowly for my liking. Guess I want it all fixed now!

Link to comment
Share on other sites
T.H. Community Regular

Don't know if this might be the issue, but I'll share my own stuff in case it helps!

I had depression, big-time, and my daughter had the huge anxiety issues. Likely we would have been diagnosed with ADD if I'd gone to the doc - we had lots of the symptoms.

What our problem has turned out to be:

1. Some food allergies and sensitivities (some tested, some found through food journals). These affected some of our symptoms because they were causing gut inflammation and that was inhibiting our absorption of tryptophan, which affected our bodies' ability to make seratonin and melatonin. Big impact on the brain. I have also heard that fructose malabsorption can cause this problem.

2. Oats. About 10-15% of celiacs react to oats, even gluten-free ones, just like wheat, rye, and barley. It's called Avenin-sensitive enteropathy. The problem here is that practically NO companies view gluten-free oats as an issue when it comes to gluten and cross contamination. So many of the major gluten-free companies do not use the same cc prevention practices with their gluten-free oats as they do with wheat, rye, and barley. Bob's Red Mill, for example, makes gluten-free oats in their gluten-free facility, and I know a number of oat sensitive celiacs who cannot have their flours and mixtures. Lundberg rice grows oats as a cover crop, and again, I have known oat sensitive celiacs who always get a little sick when they eat this rice, too, even though some other rices are just fine. With this issue, only CSA certified gluten-free products will be totally safe (companies are not allowed to have oat cc along with WRB, to get this certification).

3. The more significant issue (for us) has been that we are more sensitive to gluten than what is considered 'legally' gluten free (<20ppm of gluten). There are a number celiacs in my family and 2 of us seem to have this issue.

I and my daughter were unable to improve on foods that are <20ppm. Depression was still bad, anxiety was still bad. We have had to significantly change our diet - fresh veggies, fruits, meats. Beans and nuts are often problematic because of processing cross-contamination, so we have to source those carefully. No dairy.

Honestly, for us, the majority of processed gluten-free foods are no good. We've been on our 'good' diet for months now, and then I started trying to see if my daughter could have a little bit of gluten-free stuff. A gluten-free cookie one day, a gluten-free cracker another day, and slowly the anxiety started ramping back up again until we stopped and went back to whole foods. For myself, I don't have to get gut symptoms to have trouble with the mental stuff.

One other issue with this is that the majority of meds have been problematic. Something to check on with your meds? Call up the company, see if they actually test for gluten. In my experience, drugs are often called 'gluten free' because no gluten was added, but they can be cc'd like mad and you'd never know it because they aren't tested. At least if they've tested, you'll know.

And if they say 'our product has absolutely ZERO/NO gluten,' then you know they have no clue - because no one in the industry uses a test that can test down that low (doesn't exist, is what I've heard). Often you will have to ask what the ppm(parts per million) detection cut-off was for the test, to really get them to go look. :-(

Just as an aside - more people may have this issue than the medical community is aware of. Studies done on safe levels of gluten have been taking healed celiacs only. And of course, celiacs that are healed had to heal while eating a diet of 20ppm or less, since that was the legal requirement in the countries where the studies were done. So...they did studies on people who healed while eating 20ppm of gluten or less, and then discovered that 20ppm of gluten or less will not damage the gut! :rolleyes: Kind of like saying you have to have blue eyes to be in a study, and then concluding that all humans have blue eyes, ya know?

Oh! One last thought - have you been tested for vitamin deficiencies? I only ask because my GI doc had once mentioned that he's had patients who had to take almost 50 times the normal dosage for some vitamins, because they were absorbing that vitamin so poorly. It had to be monitored by the doctor, and tested repeatedly, so that as the absorption improved, the vitamin dosage would be lowered. But without a test, it can be difficult to know if you are properly absorbing the vitamins you're taking. :-)

Shauna

Link to comment
Share on other sites
windee Rookie

Thank you every one for your help. I saw my gastroenterologest yesterday and all of my blood work is GREAT. He said it is very unusual to get this far so fast. I have worked hard for it! I am still having all the head issues but getting help with counseling and a psychiatric to try to get the meds right for me with depression. Then on to the ADD. This is a great community and has been a huge help for me. It helped to give me hope and deal all of this. Thank you again.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



windee Rookie

I understand what you are saying! Seems like it takes nothing to distract me from what I am doing. I have trouble focusing on one thing and completing the task. I too was older when diagnosed - 59 - and it makes me angry too. Angry to be this old, finally retired and don't have the energy to do what we wanted to do. The energy is coming back.... but too slowly for my liking. Guess I want it all fixed now!

That is a problem with me also! I want it fixed now.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,060
    • Most Online (within 30 mins)
      7,748

    Demandcpm
    Newest Member
    Demandcpm
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
×
×
  • Create New...