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

Family Thinks I Am Neurotic...

norahsmommy

Recommended Posts

norahsmommy Enthusiast
norahsmommy
Posted

They think I am purposely looking for things 'wrong' with my kids. I had a miscarriage 2 yrs ago at 12 wks gestation, and 2 wks later I was pregnant with our youngest daughter. It was a stressful time and I worried alot. When she was born I was very relieved. She was a perfect and easy baby. Very different from my fist 2 who never slept and cried all the time and ate constantly. As soon as I started introducing solids at 6 months things changed. Her perfect yellow seedy breast milk poo changed overnight to huge firm logs of poo that she couldn't even get out. I had to pull them out and she would scream in pain and crawl up my shoulder trying to get away from it. I had been giving her veggies, fruits (one at a time of course) and checking for reactions like you are supposed to. She loved to bite and chew so I would give her those gerber puffs that melt as well. It never occurred to me that it could be the puffs causing problems. I also fed her baby oatmeal. She was having so much trouble pooping I started giving her straight apple juice and prunes every day. It did nothing to help. I cut out bananas completely and it got better for a bit so I thought that was it. Then it was bad again so I took her off all solids and added them back one at a time slowly to check reactions. This time I noticed she reacted to puffs, cherrios, crackers, bread etc. I eliminated all those things and she got better. her poops were great and she had no pain. Then I gave her ONE cracker and she spent the rest of the day crying and was in alot of pain trying to poop, straining for the next few days and then finally pooping a horribly large hard thing that made her bleed. She also get similar problems when she eats cheese or has anything with milk in it. I took her off all those things and talked to her doc. He thinks she is too young for testing but told us to keep her off those things. My husband told me today that he thinks I go to far with her, that I am just so paranoid about 'keeping my kids safe' that I am actually looking for things wrong with them when there is nothing wrong. He asked me today "what if I told you I had been feeding her bread without you knowing?" I told him I would kick him if he ever did such a thing, and that I know he didn't do it because her poop would tell me. I told him " I do all the research, the studying, the doc visits, YOU don't. Talk to me about being paranoid and its all in my head when you HAVE done all these things." The more I research the more I understand the more I question my own possible sensitivity to gluten and my 2 older kids as well. I don't think I am being paranoid, I think I am being thorough. I really hate when I tell my husband that I have had bm issues for about 3 yrs and since going gluten free fell 100 % different he tells me its all in my head. When he told me drinking milk made his stomach hurt I didn't bat an eye and went out and got goat milk and lactaid for him to try to see if it helped. Then after he had been drinking no milk at all or lactaid he was suddenly able to eat beans and tuna. Foods he had previously not been able to eat because one caused him stomach pain and the other swelled his esophagus shut. Did I tell him it was all in his head and those things were unrelated? NO, I believed he was right. Sorry, long vent. I am just upset.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

It is upsetting!!! It is bad enough having our doctors not believe us and thinking we are being hypochondriacal, without husbands added to the mix. I think you are being an excellent mother (and wife :o ) although you would have probably liked to say something. Perhaps in time he will come to understand that your wee girl has some serious problems that you are trying to solve. Do you share any of your research with him, or is he just not interested?? He should be forced to read some of this stuff to be made to realize you are not just making this up, and that there is a direct cause and effect relationship to what is happening. Make him come along to a doctor's visit if that is the only way he will get to see the light. I am so sorry you are having to go through all this stress. :)

dilettantesteph Collaborator
dilettantesteph
Posted

It took a long while for my husband to get with the program. It was hard in the meantime and he would say things like that too. It made me angry, and made me doubt myself. He was probably just in denial. When I learned about the denial stage of accepting an illness it helped me to understand. Keep up your hard work being a good mother and he will eventually come around.

quakenbake Rookie
quakenbake
Posted

You are most certainly not neurotic and sound like a great, and understandably worried, mother. I had horrible colic as a baby and needed special predigested formula. I have since suffered with all kinds of health and GI problems and am now just discovering that I am intolerant to gluten. You sound like you are doing everything right- trying to figure out what is causing your daughter's problems and making sure she isn't eating breads and such. It is hard to accept the diagnosis or potential diagnosis of any disease, especially when it is your child. It seems like it's easier for you to understand because you seem to have gluten sensitivities as well, so you can empathize with as well as actually see what's happening with your daughter. Your husband will come around eventually, but I'm sure it is very frustrating in the mean time. I hope things turn around sooner rather than later; patience, although needed in vast amounts from any perspective, can be hard to come by. Just keep doing what you're doing, and I'm sure it will all be fine.

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. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for 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/   
×
×
  • 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.