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Help! Pep Talk Needed!

F.deSales

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F.deSales Rookie
F.deSales
Posted

I have been gluten free for 7 weeks. Had my first normal bm in months today. Went to the doc today said I need to have another EGD/colon done . This time I have to eat gluten for two weeks staring tomorrow to make sure the test in accurate. I am trying to get the courage to do so. I can't do the regular blood test because I have complete Iga deficiency.

When I think of the pain and hours I will spend in the "powder room" I get really scared. I am getting very depressed too. I am just starting to feel a bit better and now it is back to a living nightmare. My hubby is going to make sure I do as I am told because last time didn't and the procedure was canceled.

So, I guess I am just asking for pep talks and prayers. I know that you all have probably have gone though this also and I would appreciate some "I lived to tell about it"

Thanks. This group is a blessing.

A~

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mamaw Community Regular
mamaw
Posted

Let me be the first to offer prayers & a BIG HUG to you.... I understand that this isn't a hard painful test but it sure does make for a sore hinny!!! The prep is the worst part I think...

Hopefully the docs will not ask you to repeat again for a long time... I'm going Aug 8 for my endo & colonoscopy. I said I wanted both done at once instead of two seperate times....I'm also repeating because I was just in the hospital......

I alway tell myself it could be something worse & that there are many who will suffer so much more than me....& I remember my savouir on the cross. I will gladly do the test!!! God's Blessings are being sent your way, be sure to catch them & place them near your heart.

mamaw

F.deSales Rookie
F.deSales
Posted
  • Author
Let me be the first to offer prayers & a BIG HUG to you.... I understand that this isn't a hard painful test but it sure does make for a sore hinny!!! The prep is the worst part I think...

Hopefully the docs will not ask you to repeat again for a long time... I'm going Aug 8 for my endo & colonoscopy. I said I wanted both done at once instead of two seperate times....I'm also repeating because I was just in the hospital......

I alway tell myself it could be something worse & that there are many who will suffer so much more than me....& I remember my savouir on the cross. I will gladly do the test!!! God's Blessings are being sent your way, be sure to catch them & place them near your heart.

mamaw

Thank you for your pep talk and sending me some blessings! I need to take to heart my quote from my favorite saint (see below) and like you said remember He who suffered so much for us all that we might be saved! I will keep you in my prayers. And when I am feeling "the prep work" I will send extra prayers your way! It looks like you will be having yours one day before me. Do let me know how things went and how you are doing. I read some of your other posts and it seems like you have some medical crosses to carry like me.

God Bless,

Angie

"Do not fear what may happen tomorrow. The same loving Father who cares for you today will care for you tomorrow and everyday. Either he will shield you from suffering or He will give you unfailing strength to bear it. Be at peace then and put aside all anxious thoughts and imaginings" St. F. de Sales

mhansen Rookie
mhansen
Posted

Good luck and visit the bookstore and splurge on some magazines then go straight to your favorite pizza shop and have a piece for me.

I will send blessings and good thoughts your way this week

Belinda Meeker Apprentice
Belinda Meeker
Posted

Angie,

I feel for u, and will include u in my Prayers as well :)

I always ate pizza rolls by Totino's and wondered why I had those itchy blister on my feet..... well to make along story short they have the nasty word "GLUTEN" right on the package <_< (didn't know about Celiac's then)

So u could try those to make ur process go a lil faster :(

I think the prep isn't as bad as getting glutened, at least for the prep u don't have all the other side affects :huh:

Good luck and God Bless U :)

Belinda

ravenwoodglass Mentor
ravenwoodglass
Posted
I have been gluten free for 7 weeks. Had my first normal bm in months today. Went to the doc today said I need to have another EGD/colon done . This time I have to eat gluten for two weeks staring tomorrow to make sure the test in accurate. I am trying to get the courage to do so. I can't do the regular blood test because I have complete Iga deficiency.

When I think of the pain and hours I will spend in the "powder room" I get really scared. I am getting very depressed too. I am just starting to feel a bit better and now it is back to a living nightmare. My hubby is going to make sure I do as I am told because last time didn't and the procedure was canceled.

So, I guess I am just asking for pep talks and prayers. I know that you all have probably have gone though this also and I would appreciate some "I lived to tell about it"

Thanks. This group is a blessing.

A~

Have you been seeing improvement on the diet? It sounds like you have. Would you consider Enterolab testing? You do not have to go back on gluten for that.

If you are firmly decided to do this please be aware that you can still have a false negative on the biopsies. Also if you have a problem with gluten the challenge may make you very, very sick. If this happens be sure to contact the doctor that day, some have the common sense to diagnose you then. A strong reaction after adding gluten back in is considered diagnostic, if you have one you should consider saving yourself the trauma and expense of the procedures. If it sounds like I am very anti gluten challenge it is because mine almost killed me. Something that had never happened when I was eating it every day, only after a couple months without it.

jerseyangel Proficient
jerseyangel
Posted

Best of luck to you, Angie :) I hope the gluten challenge won't be too bad for you--if it is, Ravenwood had some good advice.

The actual procedures are really not bad at all. I had both done the same day, too. The colo prep the night before is far and away the worst part of the whole thing.

Anyway, please ask that the doctor take many (8-10) samples during the endo. Damage can be spotty and easy to miss. :)

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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