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Need To Let The Thoughts In My Brain Out

dream77

By dream77
in Coping with Celiac Disease

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dream77 Apprentice
dream77
Posted

Hi,

This is more a venting mail for some kind of re-assurance.

I feel certain this gluten issue started aftetr a stomach bug I got from my then 10 month old.

I was at the peak of stress.. just recovering from thyroiditis.. transition to daycare for my child, a full time job and wondering what was going on...

In the 2 years .. visits to one doctor after another .. a fluctuating thyroid issue, escalating neuropathic pain, MRIs after MRIs to rule in.out MS and of course dealing with chores, work, toddler ...not allowing anything else to suffer because of my health issues which no doctor even recognised as an issue all this time,

Since nearly 3 years now I feel like I am doomed.. it is very negative feeling which I realise but finding hard to control.

I feel like my brain has gone into a mode where I am not enjoying anything but am waiting for the next bad thing to happen subconsciously making me wary and not allowing me to enjoy anything.

Anyways recently I also realised my child wants a sibling .. HA.. Given my undiagnosed but certain gluten sensitivity I am really afraid to try for a second child.

I've read articles on autism and other issues related to gluten. I know of one autistic child already who has several (casein, wheat and other) allergies.

Even if I do try for another childm I don't know what "obvious" risks I am exposing the child to given my antigliadin antibodies. (Again the doctos don't believe this is gluten sensitivity despite this marker being set)

What is the right way to think about this topic.. my brain is foggy on this subject.

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ang1e0251 Contributor
ang1e0251
Posted

Are you eating gluten free right now and for how long?

dream77 Apprentice
dream77
Posted
  • Author
Are you eating gluten free right now and for how long?

Oh gluten free since 3 weeks and plan to stay gluten free.

I feel atleast 60 % better because the 3 weeks before going gluten free were the worst ever wrt pain, burning all over and even blood pressure dips for some reason. To re-iterate I am not a "diagnosed" celiac but self diagnosed in frustration over perfect labs except slightly elevated sugars (close to upper normal range) and a celic panel showing anti-gliadin antibodieis.

2 celiac panles have been done one here back in September 08 and one in India in Dec 08.

Both showed very positive antigliadin (the one in India even more so) and both doctors who ordered it told me to ignore because the endo-m test was negative

I forgot to mention I have hashimotos and am on treatment for that. I have low ferritin and Vit D and am supplements fot those.

Mtndog Collaborator
Mtndog
Posted

There is no "right way" to think about all this- you feel the way you feel and that's OK. You've been through a lot and don't let anyone tell you otherwise! Between the thyroid, the pain, working full-time and caring for a toddler, your body has dealt with a lot. Take a deep breath and give yourself credit for persevering!

Stay gluten free, see how you feel. Once your body starts to absorb minerals (like Vitamin D) you will have more energy and clearer thinking. Give yourself some time to get the thyroid under control (you'd be amazed at how much this alone can exhaust you and cause you pain) and get the pain under control and then think about whether or not YOU want to have another child.

As far as passing on the gluten intolerance/celiac, there is a 50/50 chance. I don't much or if there even is a link between autism and celiac- others may know more about this. Many parents of children with autism choose to put their children on a gluten/dairy free diet because it seems to help even though they may not necessarily have celiac.

Take the time you need. If you do decide to have another child, if you're healthy, your baby should be too!

ang1e0251 Contributor
ang1e0251
Posted

You plainly have celiac disease if you have two positive blood results. Endoscopies can have false negatives for various reasons. Just know that you haven't been gluten-free very long. That, along with your thyroid problems, can certainly have you anxious and very fatigued. As mentioned, give it time and give yourself all the good food and supplements your body needs. The vitamin D will be very helpful. You might consider sublingual B12 ( the methyl kind) and magnesium also.

Be calm and just give yourself a year or two to stablize. There's no hurry.

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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