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 Our Content
    eNewsletter
    Donate

Husbands Not Believeing


janelyb

Recommended Posts

janelyb Enthusiast

Ok so I am fustrated with my husband.....1st off he doesn't feel the gluten-free diet is helping our son at all because our son is still having ab destention and constipation and tummy pain. Well I am trying to explain to him this doesn't happen overnight and there have been a few mishaps with cc and we don't know if he is maybe reacting to something else like milk.

Then I also challenge the diet for myself to see if it helps and this just upsets my hubby more. He thinks my symtoms are phycological because of our son...hummm, uh no, I've had tummy woes way before our son was around and even further back than before hubby was around.

He's just bummed feeling like he'll never be able to eat out or fast food again. I told him he's welcome to eat that stuff when ever he likes. And it's not like our family dinner meals have changed, I make the same stuff as before the gluten-free diet with a few small changes that he is already use to from when our family was begingin to eat gluten-free lite a year ago.

Anyone else's hubby feeling the same way?????


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



Celiac.com Sponsor (A8-M):



Michi8 Contributor

Yup. My husband is of the "need a drs official diagnosis" camp.

I've had no luck with diagnosis for gluten intolerance, but have symptoms as long as I am tall. So I'm trying the diet. He agrees that I need to figure something out, because it's clear that my symptoms are an issue. But he is concerned that I will go through this diet and not believe in a negative result, because I'll end up blaming it on cc.

So, he's concerned that I'm not being careful enough with cc, especially since I'm preparing gluten-filled lunches, snacks and meals for the family (and he's right on that count...I just have to do the best I can to keep my diet free of cc) yet he's not willing to have the house go completely gluten free, or join me in my efforts. I told him if he can't be 100% supportive, he needs to keep his negative opinions to himself, and let me figure out what I need for my own health.

This summer I'll be trying an elimination diet with the kids too...and that will include going gluten free for a length of time. Surprisingly, he's supportive of the kids doing this. I'm really hoping that it will give us some aswers with my kids' health issues too.

BTW, the reason I need to try a elimination diet for my eldest is that he has had chronic constipation issues since he started solids as a baby. It resulted in him having major bowel distention and problems with him soiling and wetting himself (not feeling urges to go due to bowel distention disturbing the nerves) last year (at 8yo). He has since been on laxatives, exclusively PEG over the last 6 months, which has helped immensely. We're hoping his bowel will return to normal size over the next 6 months so we can back off on the meds. Though, in the long run, I really believe that dietary change will make the biggest difference...I'd hate for my child to have to take PEG for the rest of his life. Our 4yo daughter is now having problems with constipation and tummy aches too. :(

Michelle

janelyb Enthusiast
BTW, the reason I need to try a elimination diet for my eldest is that he has had chronic constipation issues since he started solids as a baby. It resulted in him having major bowel distention and problems with him soiling and wetting himself (not feeling urges to go due to bowel distention disturbing the nerves) last year (at 8yo). He has since been on laxatives, exclusively PEG over the last 6 months, which has helped immensely. We're hoping his bowel will return to normal size over the next 6 months so we can back off on the meds. Though, in the long run, I really believe that dietary change will make the biggest difference...I'd hate for my child to have to take PEG for the rest of his life. Our 4yo daughter is now having problems with constipation and tummy aches too. :(

Michelle

What is PEG? My sons constipation also started when solids were introduced at about 7 months old. He's been on a varitey of otc and script laxes, many don't do the job. We found one that does work but unfortunately doesn't seem to be very safe for kids or atleast there is no study on them and I have already seem not the typical side effects in him while he is on the med....one that the FDA hasn't yet listed as a side effect too.....we take the generic form of Miralax.

Fiddle-Faddle Community Regular

My youngest was constipated when starting solids as well, but eliminating rice, wheat, and potatoes, and adding plenty of "stone fruits" did the trick. I did give her oatmeal, but that was before I had any problems with gluten.

Michi8 Contributor
What is PEG? My sons constipation also started when solids were introduced at about 7 months old. He's been on a varitey of otc and script laxes, many don't do the job. We found one that does work but unfortunately doesn't seem to be very safe for kids or atleast there is no study on them and I have already seem not the typical side effects in him while he is on the med....one that the FDA hasn't yet listed as a side effect too.....we take the generic form of Miralax.

Miralax=PEG. Our sons are taking the same product. :) PEG stands for polyethylene glycol. In Canada, it is only available in the generic form, and is not considered a prescription item. Our pediatrician believes that PEG is very safe as it simply pulls water into the intestine, and is not supposed to cause dependence. We have have seen no side effects whatsoever.

What side effects have you seen?

Michelle

janelyb Enthusiast
Miralax=PEG. Our sons are taking the same product. :) PEG stands for polyethylene glycol. In Canada, it is only available in the generic form, and is not considered a prescription item. Our pediatrician believes that PEG is very safe as it simply pulls water into the intestine, and is not supposed to cause dependence. We have have seen no side effects whatsoever.

What side effects have you seen?

Michelle

mood changes, slurred speech, gross motor delays......now my son already has a few delays in speech and motor but when he's on PEG it's so much worse...the minute he's not taking it everything that was messed up (besides bowels) go back to his norm. Read the insert it says not tested long term on children and not to use for more than 2 weeks.....so I guess taking it on and off for 3 years must not be good.....I so want him off of it....

I thought I was crazy but apparently there are tons of people having simular side effects that the FDA isn't listing. I found a ton of people through a yahoogroup on it.

janelyb Enthusiast
My youngest was constipated when starting solids as well, but eliminating rice, wheat, and potatoes, and adding plenty of "stone fruits" did the trick. I did give her oatmeal, but that was before I had any problems with gluten.

it oviously didn't work for my son when I did it. This poor kid his bowels and food just don't mesh well.


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



Celiac.com Sponsor (A8-M):



Michi8 Contributor
mood changes, slurred speech, gross motor delays......now my son already has a few delays in speech and motor but when he's on PEG it's so much worse...the minute he's not taking it everything that was messed up (besides bowels) go back to his norm. Read the insert it says not tested long term on children and not to use for more than 2 weeks.....so I guess taking it on and off for 3 years must not be good.....I so want him off of it....

I thought I was crazy but apparently there are tons of people having simular side effects that the FDA isn't listing. I found a ton of people through a yahoogroup on it.

That's interesting. There is no insert for the product we have...it gets prepared at a compounding pharmacy. I will check out Miralax some more online.

We're certainly not seeing any such side effects for my son, and he has had no mood changes. However, he is somewhat lethargic, but it goes hand in hand with his slow bowels...I think whatever is the root cause of that is impacting his energy levels overall. We did see some energy improvement when we did a short dairy free trial. We will be trying a thorough elmination diet, especially focusing on gluten and dairy to see if there are improvements.

Michelle

Fiddle-Faddle Community Regular

The other thing that helped my youngest was exercise (seriously!). My first two were boys and ran around like cranzy, and didn't have problems. She was content to sit for hours playing with toys, but not moving off her bottom. Things did improve a lot after I started taking her to the playground twice a day and having her run around (not just sit on the swing).

I'm sure that wouldn't be nearly enough to solve the problem for you guys, but it might add a little bit of help...

Michi8 Contributor
The other thing that helped my youngest was exercise (seriously!). My first two were boys and ran around like cranzy, and didn't have problems. She was content to sit for hours playing with toys, but not moving off her bottom. Things did improve a lot after I started taking her to the playground twice a day and having her run around (not just sit on the swing).

I'm sure that wouldn't be nearly enough to solve the problem for you guys, but it might add a little bit of help...

Thank you for the suggestion. My son is definitely not a natural at most sports, so it takes some effort to get him out to really play. His passion is reading and writing, so even when he's outside, it's tough to get him moving. Having a trampoline in our yard helps get him out there more. ;)

He is also a big guy...not fat, but we know he will be a big man (tall, big bones.) He gained weight very quickly as a baby (20lbs at 6 months on breastmilk alone), and has always been one of the biggest kids in the class.

That said, he is good at swimming and swam 2 hours per week over the winter. He is also good a skiing, and we were able to take full advantange of having lift passes at the local hill this winter. Soon he will be starting baseball and is back into swim lessons once per week until the fall when he'll go back to 2-4 hours practice per week. :) All three of our kids have participated in activities outside of school year-round: gymnastics, soccer, basketball, baseball, swimming, skiing, dance, wall-climbing. They each must pick at least one sport per season.

Michelle

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,073
    • Most Online (within 30 mins)
      7,748

    David Croft
    Newest Member
    David Croft
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised.
    • KRipple
      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • Jmartes71
      Ginger is my best friend, it helps alot with tummy issues..
    • aattana
      Hi Phosphone, did you ever figure out what elevated your DGP?  I am in the same boat. 
    • trents
      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
×
×
  • Create New...