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I Am Offically Gutenized! And Going Off The Deep E

mela14

By mela14
in Coping with Celiac Disease

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mela14 Enthusiast
mela14
Posted
  • Author

dperk,

I'm glad that you are doing better. Hang in there and stay focused. I know it is hard as I sometimes lose it myself. This board has been very helpful and I have learned a lot here. The people on this board are also very compassionate as we have each been through our own hell. I am nowhere near I need to be but have been able to come here with all my baggage and open up. That in itself has been a big help!

I think I will have to lay off the potatoes myself as well as the nuts. They are probably too fatty for me. I was trying to eat them for more protein. I am still very weak and feeling malnourished. today I see my new GI dr and see what he has to say.

Which book are you talking about? There's also another book aout there about eating right foryour blood type. I was introduced to that concept years ago by the author's father (Peter D'Adamo Sr) and it seems I may have to go back to it. I am going to try to get the book today at Barnes and Noble. I have his father's book somewhere and although it is about 25 years old...the concept is the same..."One Man's Food is Another Man's Poison".

Good luck with everything!

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dperk Rookie
dperk
Posted

The book I found at the library is: The PH Miracle - Balance Your Diet, Reclaim Your Health. It's by Robert O. Young, Ph.D. It helped me a lot to control the acid reflux. I didn't follow the diet completely for very long, but it really did help me find the foods I could eat. I got some better because it was no bread, but he says to eat veggie burgers, which have wheat gluten. So I would get sick again when I tried them - this book does not take into consideration anyone with celiac disease. But the rest of the foods I did good on. It tells you which foods are acid, so I stayed away from them. At least I had something to eat besides baby food - so that felt pretty good. Hope this helps.

babiesatemydingo Newbie
babiesatemydingo
Posted

Good luck to you and don't give up.I am gluten-free for 3 or 4 years now can't remember?It is always there but life goes on and lots of folks are in worse shape with much more serious illness.

Get out there and find the products you can eat and which you like the best and you will be fine.There is days I feel like crap but what can you do! Just have to keep on keepin on :)

mela14 Enthusiast
mela14
Posted
  • Author

Dperk,

i am going to try to find that book if I get to Barns and Noble today.

i went the other day and picked up the book taht I was talking about....Eat right for your Blood Type and then decided to put it down. There were a lot of things that were listed as OK for my typs but I know that I reacted to. it also doesn't take into consideration the gluten problems. I will have to be my own jusdge forthe diet.

Right now....I am feeling worse but I think it could be candida. In giving up cakes and cookies I've been craving a little something sweet and having raisins, carrots, apples sauce and or course baby jarred fruits. All of which have a lot of natural sugars. Everything seems to have gotten worse and my gut feels more raw and inflamed. the only thing that I can think of is that the sugars flared up the Candida. Last night I started on half a Nystatin...and I was up early sick to my stomach nauseous and muscle pain...racing heart. I just feel so ill...........of course I got anxious and panic stricken....what is going on and how do I FIX ME?????

I think there is no simple clean cut answer........

I will just have to keep learning and keep trying.

I 'll try to read some of the book if i get over there today. I need to pull myself together first.

Thanks for your help,

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
    • knitty kitty
      Coeliac or not coeliac

      By knitty kitty · Posted

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      Thank you for responding.  I didn't intentionally reduce gluten prior to the endoscopy though I dont generally eat a lot of it due to the unpleasant symptoms. I was under the impression my TTG of 87.4 was very high, at least that's what my doctor said.  
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